Reasons why donors decline to donate

[sherri]

Does anyone know of any research out there exploring people's feelings about becoming a living donor? Are there any polls out there compiling data about people's willingness to donate to family, non related, anonymously. If they have been tested and declined to go through with the surgery, do hospitals keep information about the reason why donors who did pass all the medical and psych tests decided to decline? What percentage of donors use the medical out?

In an attempt to increase the number of living organ donors the medical community developed laparascopic surgery for the donor so that the surgery would be less invasive, hospital stay shorter, less serious complications, easier recuperation time (less time off of work and lost wages). The number of living donations increased initially but was not sustained. It seems as "easy" and down playing the surgery did not work.  The impediment to donate may not be the nature of the surgery, number of days in the hospital, lost wages etc. Some states have the tax credit for donors but that does not seem to be a big incentive either. There are of course those who say, paying the donor will increase the number of organs but I would like to explore other options before resorting to the payment method.

If patients (and I mean healthy donors) felt more supported medically and psychologically by the hospitals would that be more of an incentive? Is it unfair to compare other healthy groups of patients like maternity patients? Most hospitals develop state of the art delivery rooms, support for moms, support for dads, siblings, child birth classes, opportunities to come to the hospital before to see everything, connection with registered nurses after delivery etc.

Also since many more females than males donate would it be feasible to create nursing models similar to the ones of having a nurse navigator for breast cancer or other female cancers patients? There are support systems for female patients and heart disease, lung disease etc. Do female donors face certain obstacles like family responsibilities, child care, house hold chores that are different from male donors? Male donors often face more of the financial or insurance burden.

Just want to get some feedback.

Thanks,

Sherri

[Michael]

Sherri,

Try this: go to Google Scholar and use search terms like "psychosocial living donor evaluation" and see if any of the items match what you're looking for.

http://scholar.google.com/

Let us know what you find!

[brenda]

Perhaps instead of trying to increase the number of living donors, we should put our efforts into
1. increasing cadaver donations,
2. finding other ways to replace failing kidneys (look at how the "temporary" heart replacement pump is now replacing heart transplants),
3. preventing kidney failure through both primary and secondary prevention efforts (reducing causes, finding better treatment).

As some of you know, I am a living donor who has not faired well post-donation; I would like to see nephrology move away from living donation - particularly expanded criteria for donors.

Take care and have a healthy New Year,
Brenda
Donated 5/17/2012

[dodger]

I had read that Spain considers people upon their deaths as donors, but they are given the option to opt out before death.  We do the opposite, opt to become one upon our death.  They have a very high donor sucess rate because of their program.  That gives first responders the option to consider all victims as donors and place them on life support immediately thus preserving so many organs and tissue which would other wise go unused.  Perhaps we should take a lesson from someone else's success rate and use it as our own.

Those of us that have offered our kidneys are a brave lot.  Why would anyone, in perfect health even consider going through the surgery, losing half of their filtering capability for life, be a possible health insurance liability, and just get a thank you for what they did.  No wonder more don't come forward.  It is too bad more donors that are 20 years post donation don't post here, or any where.  There are a few that are 10 years.  But people want to know the looonnnggg term outcomes for living with one kidney.  Donation hospitals don't even keep track.  If they offered a free annual check up maybe more would continue to get checked and there then would be more of a record, but, there isn't much of one to be found, sad really.  They ( the medical community) keeps telling us we can live with one kidney.  But, they don't supply long term outcomes. And there are some life style changes that come with donation as well if you want to maintain that one kidney for a long time. You know as we age there will be some medical issues that develop, it just does with age.  I was 60 when I donated, I have lived a good share of my life, raised my children, traveled, and have had a good life.  I can live with anything that develops for me from now on out.  But asking a young person facing all this with normal expectations, I can see where it would be a real hard decision. 

I think there should be a LOT more education on obesity and diabetes, with kidney failure being one of the biggest outcomes.  Show the general public dialysis, interview those on dialysis.  If you don't do dialysis, you die, plan and simple.  And dialysis is no picnic either.  Many are unable to work once starting dialysis because they really don't feel well and because few employers are will to put up with the time needed off for doctor appointments or dialysis schedules. Many people have other illnesses that have caused kidney failure, but the obesity and diabetes are two diseases which can be controlled for the most part.  We are facing an aging population, there will be more and more people facing kidney failure not just the aging, but because of the obesity and diabetes in the younger population.  It is becoming an epidemic!!

I don't believe living donors is the answer either, there aren't enough, and the cadaver donors use is pathetic at best.  Something needs to change.  And after someone gets a transplant they are covered for 3 years by Medicare for the medicines they need, after that, they must pay for it themselves, and they are really expense, if they don't have a job that covers the expense.  Getting a transplant is no picnic either.  Prevention is by far the wiser choice.

I am glad I was a donor, I would do it again if I could, but, there are not enough living donors to fill the need.  Thousands die each year waiting for a transplant.  Dialysis costs over 70,000 a year, each year, a transplant surgery costs 50,000 and gives the transplant recipient hopefully, years of use.  Kind of a no brainer isn't it?!

[Fr Pat]

     I believe that several other countries, in addition to Spain, have adopted the "opt out" legal system, in which anyone who dies is presumed to be a donor unless he or she has specifically stated previously that they do NOT want their organs/tissues transplanted after death. It appears to have significantly increased the number of transplants.
     Fr. Pat

[Karol]

There's an article in the news section here on LDO that discusses the number or "eligible deaths" and how many organs are able to be used from those donors. Contrary to what most people think, we are actually using almost all of the deceased donor organs in the US. Approximately 9,900 donors are available annually, which would be about 19,000 kidneys per year, if all went perfectly. But with 96,000 people currently waiting for kidneys, and adding to that list about 500 new candidates per month, there's still a large gap. Living donors are making a difference.

[sherri]

Michael,

thanks for the tip. I will continue to search. So far haven't found much about what happens during the process. It seems to me that the medical community keeps trying to make the donation process "easier" in the sense of reducing length of stay in the hospital, less invasive with the laparoscopic, little to no scar with the keyhole incision, reimbursement for lost wages and travel. When I think in reality donors really want reassurance and a guarantee before, during and after surgery. They want to make sure that the evaluation process is fair with the donors' interest in mind and in the event of a complication then the hospital will cover them completely. The independent donor advocate is supposed to address the approval to donate process but we see in reality it really falls short in most hospitals. It is not mandated, there are no protocols in place specifying the credentials of a living donor advocate and each hospital seems to create its own protocol. There are not standards of practice which must be followed. There is a lot of missing data regarding long term follow up for donors and again no mandated registry for living donors. My theory is that if the medical community really gained the trust of the public with mandated protocols and standards of care using qualified living donor advocates, living donor nurse advocates (like use in oncology) and mandated living donor registries, lifetime guarantee of care through Medicare then the public may come to trust the system more. Donors aren't necessarily looking for less of a scar or a day less in the hospital. No one can guarantee a surgical outcome but they can guarantee that if something does go wrong or you are harmed in any way the hospital should stand by you.

Brenda,

I agree. I would like to concentrate on reducing the number of recipients through education about high blood pressure, diabetes, weight management. If we had less recipients we wouldn't need so many donors. I would also like to promote more deceased donation so that living donors do not have to risk their lives or future health in order to improve the quality of life of a friend or relative. But the reality is that many people do want to, or in some cases feel compelled or obligated,to donate a kidney to help their family. It is in those cases, where I think a better donor support system would be helpful. Brenda, I so wish that someone would have protected you and had been there for you when things did not turn out so well for you. I hope you are able to find caring health care professionals to assist you as you work through some of negative outcomes you have had since your donation experience. Wishing you a happy and healthy New Year.

Sherri

[Fr Pat]

     Just to mention that volunteering with your local branch of the National Kidney Foundation can be one way of trying to address all these issues. They try to promote kidney health awareness, screnings to spot hiden kidney problems, kidney treatments, transplants from living and deceased donors, changes in legislation, fund-raising, etc. Info at www.kidney.org . It's not a perfect program of course, but can be a good way of trying to improve things.
   best wishes,
      Fr. Pat

[Donna Luebke]

Sherri,

Suggest read the work of anthropologist, Renee' Fox regarding organ donation including living donation.  I find it better to go back as far into the studies as possible since the first live donor was 1954.  There is alot to read.  Look for the work of social scientists and anthropologists.   There are many reasons why the profile of the live donor has changed.  Mostly due to ESRD patient profile changes.  If I develop ESRD in my 70s, I am less likely to have a sibling donor and certainly not a parent donor.  An older live donor is more likely to have medical issues like hypertension, diabetes, cardiovascular disease, etc and not be the most suitable donor.  The live donor demographic has changed, too, in the area of who the donor is in relation to the intended candidate.  We have smaller families today so again, a limited donor pool.   

One correction.  If you read the literature regarding the laparoscopic nephrectomy procedure, there was never a conclusion that was a lower complication rate.  Quite the opposite.  The cited benefits for the majority of study subjects was a better cosmetic result (smaller scars vs my 12 inch scar), a shorter hospital stay and shorter recovery time.  Average time to return to work or school was shorter.  It is still a major surgery with a steep learning curve.  From my review of the literature, the majority of kidney donor deaths in the last 15 years involved the lap procedure.  Some articles include a higher rate of complications and significant numbers of patients lost to followup or who refused to participate in the study.  Even in short term studies we do not have statistically significant data.  Recent preliminary data from the RELIVE study is coming out but again, is not statistically significant and should not be generalized to all donors.  Only 3 kidney transplant programs involved; we have 196 active kidney transplant programs.   

As for navigators and the Independent Donor Advocates--you are correct in that each hospital sets its own rules.  There is no credentialing or educational requirement for the IDA.  This person is to be independent but yet we find they are not.  We know that surgeons and the living donor coordinators still want the final say on what the donor is told. If the IDA is supposed to ensure proper evaluation and consent, why are they not universally involved at least until the 24 month postdonation period when the required followup data is submitted to the OPTN?  The donor is better served if the IDA is truly independent.  I was somewhat taken aback that NATCO published a document saying the IDA should report to the living donor coordinator. The IDA is not part of a hierarchy strucuture, should not be an employee of the transplant program and should be strong in donor education, support and followup.  The living donor advocates should be knowledgeable and strong--there for the sole interest of the donor before, during and after donation.  Put donor data submission in the hands of the IDA or the donor and the donor's Primary Care Provider.  Imagine how much better the data would be in accuracy and quality.

For those who commented on increasing deceased donation--google HRSA 2013 budget and read the section on Organ Transplantation.  Unless there are improvements in the prevention of end-stage organ disease and advances in innovation & science like stem cells or organ regeneration, we will not make a dent in the numbers.  Perhaps broader sharing across Donation Service Areas or Regions could impact improved graft and patient survival  & get the candidate numbers down over time.  Death by Geography is nothing new.  For over 10 years, the federal government has pushed the OPTN to address allocation.  Where an organ is procured should not dictate allocation.

Where else can improvements be made?  Take a hard look at why grafts fail especially kidneys.  It is estimated that about 2,600-3,000 kidneys fail every year due to a recipient's inability to pay for the immunosuppression.  There are both live and deceased donor kidneys damaged during procurement which is clearly an operator error.  Recent reports by the Scientific Registry of Transplant Recipients www.srtr.org noted the number of kidneys discarded which could have been used.  Why were they discarded?  We can make an impact by improving practice in parallel with improving donation rates.   

Look at numbers--the real numbers. Again, there are not 96,000 patients in need of a kidney.  About 1/3 are inactive.  They are not candidates yet get listed either to game waiting time or to pad numbers.  With changes in kidney allocation, wait time might become a mute point.  The OPTN Final Rule states that only those medically suitable and urgent should be listed.  Follow the work of the Kidney Allocation Subcommittee and proposed changes.  A hotly debated area. 

Donna

[livingdonor101]

@ Sherri: I've run across one study that gathered data on how many and why prospective living kidney donors voluntarily withdrew from the process:

http://www.livingdonor101.com/living-donor-decision.shtml

If you would like a hard copy of the study, you'll have to send me your email address.


@Brenda: I agree the focus must shift away from supply-side economics. According to USRDS, the average onset of end-stage renal disease is 64.4 years old. The US population is aging, the demand will increase (and that doesn't count the 15% of the wait list that has had at least one prior transplant). Also, diabetes accounts for 44% of kidney failure; hypertension another 30%. Preventing and controlling those two issues would reduce the demand for kidneys considerably.


@Karol: The active kidney wait list is not rising at near the rate you ascribe. I've done multiple "wait list watch" blog posts, the latest posted just a few minutes ago. Since April 29, 2011, the active wait list has increased a whopping 2.8%. For more details: http://livingdonorsarepeopletoo.com/transplant-wait-list-watch-1-for-2013/


@whomever: When transplant centers made the transition from the open procedure to the lap, a smattering of studies emerged with titles like "result of our first X cases". They all said, as Donna pointed out, that the scar was smaller, pain was less, and hospital stay was shorter. But they also said the complication rate was pretty much the same, although the types of complications differed. And that the more experienced the surgeon, the better for the patient.

The IDA is great in theory but has not lived up to its potential. According to a survey of ILDAs published in March 2012, 54% of the IDAs defined 'independent' as 'not evaluating transplant candidates' (what?); 40% were asked by the transplant administrator to be the IDA while 26% were given the title along with their other job duties; 48.5% were trained by the transplant team, which have a pro-recipient bias; 41% are paid by the transplant center. Clearly, that was not the spirit of the Independent Donor Advocate mandate at all.

Cristy

[sloaner1982]

I would like to say that perhaps they decline to donate because by some miracle they happened to find out that they had not been fully informed and there is alot more to kidney donation than the people pushing for more living donors led them to believe. I will say that I did NOT recieve full true informed consent and I resent that to this day. The love I have in my heart for another human being was taken advantage of and I feel that I was used as a live experiment. Had I known all the risks and fully understood what living with one kidney means - I WOULD NOT have donated. My prayer is that every potential donor be protected from the lies and that they will not be decieved like I was. I noticed that you said that "they want to do it"  Of course they will want to do it,because they are told it is SAFE and very little risk and they can live long normal healthy lives with only one kidney. We are told that our remaining kidney will grow and compensate for the loss and take over. We are told we only NEED one kidney to live.
We are not told what living with one kidney means- We are not told living with one kidney leaves us all with impaired renal function with NO reserve. I have suffered huge hormone imbalances, I am diagnosed with adrenal impairment, I suffer from PTSD and more. I was never once told that my adrenals could be effected and that they are attached to the top of my kidney. There is so much I was never told. I say "yay" for anyone that decides not to donate. They may have just saved their life/quality of life! Why would anyone want to push for more people to donate when the ones that have already done so are not taken care of and tracked longterm for health. There are no longterm studies that really show how well longterm living donors fare. We are not even told the whole truth about donation before they take our organ. Where are the ethics to do no harm.

[Karol]

@Karol: The active kidney wait list is not rising at near the rate you ascribe. I've done multiple "wait list watch" blog posts, the latest posted just a few minutes ago. Since April 29, 2011, the active wait list has increased a whopping 2.8%. For more details: http://livingdonorsarepeopletoo.com/transplant-wait-list-watch-1-for-2013/

The list drops off because there are transplants done, but also because there are people dying who were waiting on the list. About 400 kidney patients die each month, on average. That's if you accept OPTN's numbers, as shown on the attached file.
Also, people go on and off the active list. Jenna is inactive now because they want a bladder scan. She will be back on next week.