Sick Atlanta Teen Kept Off Transplant List

[musicaljoke]

That's a bit unfortunate. You can't have morality tests for organ recipients you just have to accept that, as with any medical treatment, it's an area where the sun shines on the good and the bad alike. It's not like you're going to know the difference if the situation arises. The chances are that any recipient(s) are going to be perfectly blameless, or more likely perfectly ordinary. Denying them that chance on the off chance that an organ goes to someone "unworthy" is a bit of a perverse attitude. ]

There are some basic requirements that the medical system is justified setting down as a prerequisite for an organ recipient, and I think that making a judgement about a person's moral character is on the table.

A person's moral character is an indicator of how they will be able to manage a highly structured set of responsibilities that follow an organ transplant. It's reasonable to turn down certain people - an unmanaged alcoholic, or a person living a lifestyle on the dark side of the law. I see that as a prudent decision by the medical system.

 

[Hiandmighty]

The qualification process for this teen was a complete failure, IMO, and should not be so easily influenced by those able to muster up activists to fan the flames of race-based "faux outrage", or whip up social media publicity. That is the real issue-- the corruption within the organ distribution process that permits exploitation of the system for those able to figure out how to manipulate.

The Murnaghan case is another case of extreme manipulation of the system, but it's a "success" (she is now 12 and off the vent), but at what cost?

Sarah Murnaghan is still dealing with broken feet and leg bones. Some of us have wondered (we privately discuss medical stories) if she is dealing with chronic rejection and is taking high does steroids. She is alive but her quality of life is questionable.

 

[MyBelle]

There are some basic requirements that the medical system is justified setting down as a prerequisite for an organ recipient, and I think that making a judgement about a person's moral character is on the table.

A person's moral character is an indicator of how they will be able to manage a highly structured set of responsibilities that follow an organ transplant. It's reasonable to turn down certain people - an unmanaged alcoholic, or a person living a lifestyle on the dark side of the law. I see that as a prudent decision by the medical system.

At the time of the transplant, the recipient was only 15 years old. I don't know any teen that age who is capable of handling a highly structured medical regime on their own and physicians are not clairvoyant. That said, this kid didn't die two years later because the transplant failed, he died because he wrapped a car around a tree.

JMO

 

[Tulessa]

Until heart transplants are as commonplace and ubiquitous as chemotherapy, dialysis, or limb prosthetics, it's my opinion that we should continue to have a rigorous qualification process that includes a thorough evaluation of someone's criminal and social history, that makes assessments and predictions about future compliance based on past behavior. That is the moral way to go about allocating scarce resources, IMO, if we want to talk about morality in the organ distribution system. A criminal lifestyle is a CHOICE. It's not an accident, or a "youthful indiscretion."

Noncompliance is not the same as "no medical history." This teen and this family was noncompliant, probably worsening his condition much faster because of their noncompliance. The committee evaluated an extended period of noncompliance from the time of initial presentation, right up to the day they considered whether he should be on the transplant list. Part of that consideration includes what was offered to the family in the way of support, transportation to appointments, options for schooling, etc, and how they participated with various plans for his care. The FAMILY was non-compliant. They wanted a "quick fix", and were unable to properly consider the implications of his original illness, or what the transplant would mean long term, IMO.

Believe it or not, a heart transplant is an elective procedure. Even hip and knee replacement patients have a long list of requirements and education to fulfill before being approved.

I stand by what I said earlier. This teen was a terrible candidate for this transplant. The committee was right the first time around. The very scarce organ was a complete waste on this individual-- for which he and his family probably never paid a single penny toward his care-- so this story is NOT about "poor people being denied expensive care." Not only that, he continued to go on hurting a lot of other people, and committing crimes.

Are we now going to give heart transplants to death row inmates?? Because this situation was just about that ridiculous, IMO. The only place this teen would have had a chance to be compliant with his post transplant regimen is if he was incarcerated in a prison hospital ward, because turning him loose back to the streets of his violent urban neighborhood with a new heart and a few bottles of pills guaranteed failure for him, and his crime victims.

The qualification process for this teen was a complete failure, IMO, and should not be so easily influenced by those able to muster up activists to fan the flames of race-based "faux outrage", or whip up social media publicity. That is the real issue-- the corruption within the organ distribution process that permits exploitation of the system for those able to figure out how to manipulate.

The Murnaghan case is another case of extreme manipulation of the system, but it's a "success" (she is now 12 and off the vent), but at what cost?

K_Z, I have admired your posts for so long. My oldest brother died in 2002. He abused alcohol. He drank a Fifth every morning before going to work, enough to do him until he got home. Then he drank himself into a stupor. They wouldn't even CONSIDER him for a transplant, and I understood.

 

[Goose22]

Really??? I hope they feel horribly guilty. I hope they never have a good night's sleep for the rest of their lives. I hope they have nightmares about the donor, and the family of the donor, of that heart, coming back to haunt them for what they did. I have not a single shred of compassion for them. They new exactly what the issues were, and they exploited the situation. And they didn't care.

I'll save my compassion for the families of the 700 people who died waiting for a heart, in the 2 years a wasted donor heart beat inside this chest of this criminal .

We have to agree to disagree. I don't believe the family has shown they knew when he got his transplant that he would continue on this path. I do think they hoped it would help him change course and it didn't go their way. I can never fault them for wanting their loved one to live. Never. His actions were his own.

I will say that compassion is a limited resource only if you want it to be.

 

[Goose22]

Also, anyone reading this, if you aren't yet PLEASE become an organ donor! If this story bothers you enough that you don't want to then I think you need to look at the bigger picture.

 

[noZme]

K_Z, I agree with everything you have said.

Hugs to you, Tulessa. You have experienced more than your share of tragedy, but have kept a soft, kind & generous heart.

Stokes got a heart because they pulled the race card. I suppose Tulessa's family could have plopped the Native American card on the table. Someone else may want to be first in line because they have small children or even cash up front to pay all medical costs.

Transplant decisions are made according to likelihood of successful matching, urgency, The Medical Code of Ethics & common sense. Caving in to political pressure in this Atlanta case, denied someone more deserving of that heart. It seems obvious to me, a person who does not think myself to be overly judgemental.

I stated earlier that I know people who got transplants & those who died waiting.
A friend of a friend was a liver recipient. A time our mutual friend was hospitalized & we were both visiting him from out of state, she ordered several drinks at dinner (I had asked everyone else to refrain because of her) & she always had a bottle in her purse & continued drinking the whole four days we were together. Until then, she had been someone I loved being around, but that turned me off. Her wit & charm & tales of world travel, were no longer of interest. The last time I saw her, she was getting into a cab, headed for the airport & saying she couldn't wait to be served on the flight home... She's dead now. Alcohol.... yes, I do think she squandered her gift, just like Stokes squandered his.

It makes me sick.

 

[MyBelle]

We have to agree to disagree. I don't believe the family has shown they knew when he got his transplant that he would continue on this path. I do think they hoped it would help him change course and it didn't go their way. I can never fault them for wanting their loved one to live. Never. His actions were his own.

I will say that compassion is a limited resource only if you want it to be.

BBM. Well said, considering the teen's death has absolutely NOTHING to do with his heart. Ironically, last night's episode of Grey's Anatomy had a very similar theme. A teen shot during a robbery that killed two police officer brothers had a injury that destroyed his liver. The entire story was about compassion and second chances.

JMO

 

[al66pine]

That's a bit unfortunate. You can't have morality tests for organ recipients you just have to accept that, as with any medical treatment, it's an area where the sun shines on the good and the bad alike. It's not like you're going to know the difference if the situation arises. The chances are that any recipient(s) are going to be perfectly blameless, or more likely perfectly ordinary. Denying them that chance on the off chance that an organ goes to someone "unworthy" is a bit of a perverse attitude. The greater problem for people on organ waiting lists is the lack of donors, not this one guy....

bbm

Do current regs or policies specify morality, worthiness, and/or blamelessness as requirements for patients to be eligible
to be added to heart transplant list? IDTS, but if so, link pls.

Are you saying Stokes' failure to take meds and attend med appts (pre-waiting-list)
has no or virtually no predictive value about his likely medical outcome post-heart transplant? Y or N?

That ppl not taking meds & attending appts as ordered pre-transplant are likely to have same med outcome
as others w same condition who are taking meds & attending appts? Y or N?

IIUC, medical outcomes of compliant group are likely to be better (much better? waaay better?) than non-compliant group.
Maybe in that sense, a pre-waiting list, non-compliant patient is not "worthy" of being allocated a heart
when then is another same-condition patient who is compliant and waiting for that same heart becoming avail.

 

[K_Z]

Sarah Murnaghan is still dealing with broken feet and leg bones. Some of us have wondered (we privately discuss medical stories) if she is dealing with chronic rejection and is taking high does steroids. She is alive but her quality of life is questionable.

And she still has cystic fibrosis, a fatal genetic disease. At the beginning of my career 30ish years ago, I worked on a pediatric CF and Bone Marrow Transplant unit (a real dichotomy-- clean and dirty cases on the same unit). CF patients were never considered for any kind of transplants because of the underlying genetic component-- that was the 1980's. Alcoholics were never considered for livers.

At some point, must have been in the 90's or so, all of those disqualifiers went out the window, and I don't exactly know why. It's not like organs were suddenly more plentiful, or the outcomes were any better for these poor candidates. (Watch the documentary on Netflix called 65_roses, or something similar.) Transplants for these patients buy a little time, but are not a "cure". CF is a terminal illness. So is liver failure from alcoholism. Idiopathic cardiomyopathy (Stokes condition) is in a whole different category-- it's can be fatal, but there is no underlying disease, usually. There were a whole cadre of kids in the 80s and 90s who survived childhood cancer treatment with high dose chemo, only to show up with life threatening heart damage as they became adolescents. Their cancer was "cured", but now they were dying of heart damage/ failure, and need transplants (which many got). I don't know that it's the right decision to give scarce organs to people with fatal underlying conditions. If organs were plentiful, it would be a whole different discussion.

 

[Morag]

It is sadly true that not everyone who needs an organ will be able to get one, with some exceptions. If you are wealthy enough, or powerful enough, you can get that liver, heart, lung, kidney. I suppose Charlie Manson could get one if he had the money!

This troubled, 15-year-old child did not have the kind of family who could make/keep him compliant. He was very young, and he deserved a chance to finish growing up and to become a sound adult. We can't very well determine in advance whether he will become a solid citizen. Many people are awful teenagers. You just can't presume to guess which ones will be good adults.

(Is anyone here old enough to remember an episode of Dr. Kildare- or could it have been Ben Casey- back in the 60s; it was about a group of people hoping to be chosen for the limited number of spots in a dialysis program. One young woman was denied because she was deemed irresponsible -and broke- IIRC. Naturally there was a bit of a contretemps over who deserved a spot more, her or an elderly wealthy man. Ultimately, one of the patients withdrew or drank himself to death or something, and the young woman got her treatment.)

 

[K_Z]

Bottom line, hearts are very scarce resources. The most deserving should receive them, IMO. They should not be squandered on people whose lifestyle is out of control/ criminal. And I'm NOT saying that poor, black teenagers from violent urban neighborhoods should "never" be on transplant lists. We saw plenty of poor families when I worked pedes who uprooted their entire family to move closer to care, better neighborhoods, etc, just so their child had a better chance to live. These folks were poor, but not stupid or criminal. They WANTED help, wanted to better their lives, and give their sick child a chance to live. Health care professionals will go to the end of the earth and beyond for people who WANT to get better and WANT help. Many health professionals regularly volunteer their time and $$ to go to very poor countries to make surgeries and care available to poor people who walk days and days to line up to get care, and would do literally ANYTHING to improve their child's deformity, or an illness, etc.

It is mighty difficult to muster up any sympathy or compassion for people who manipulate the system, cry "poor me", manufacture and recruit faux outrage at some nonexistent grievance, or claim nonexistent discrimination in health care allocation. Poor people in this country get lifesaving treatment EVERY day of the week at no cost, in nearly every hospital.

I have exactly NO sympathy or compassion for those that won't lift a finger to help themselves, change their lifestyle, or participate in help that is offered, and THEN continue to holler "discrimination" and "entitlement". Then when they successfully manipulate the system and get what they want, they squander the opportunity. They WASTE their chance at a new and better life. Why do they deserve my sympathy or compassion when they ruin not only their own lives, but make it worse for others in the future? I'm sick of handouts to people who refuse to do anything positive to impact their health, and expect health professionals to continue to "fix" them. And I'm really sick of criminals getting more breaks and more benefits than law abiding citizens.

And if you really want to learn about more controversial issues within organ donation and transplantation, look into the official, scientific, and government statistics and studies on which races and ethnic groups are most open to organ donation, which are least open to donation, and which races and ethnic groups receive the highest proportion of organ transplants relative to their statistical percentage of the population. It's eye opening. We have a long, long way to go, as a society, to change the minds of a lot of people about the benefits of organ donation. And we can't increase the supply of scarce organs until we do that.

 

[Hiandmighty]

And she still has cystic fibrosis, a fatal genetic disease. At the beginning of my career 30ish years ago, I worked on a pediatric CF and Bone Marrow Transplant unit (a real dichotomy-- clean and dirty cases on the same unit). CF patients were never considered for any kind of transplants because of the underlying genetic component-- that was the 1980's. Alcoholics were never considered for livers.

At some point, must have been in the 90's or so, all of those disqualifiers went out the window, and I don't exactly know why. It's not like organs were suddenly more plentiful, or the outcomes were any better for these poor candidates. (Watch the documentary on Netflix called 65_roses, or something similar.) Transplants for these patients buy a little time, but are not a "cure". CF is a terminal illness. So is liver failure from alcoholism. Idiopathic cardiomyopathy (Stokes condition) is in a whole different category-- it's can be fatal, but there is no underlying disease, usually. There were a whole cadre of kids in the 80s and 90s who survived childhood cancer treatment with high dose chemo, only to show up with life threatening heart damage as they became adolescents. Their cancer was "cured", but now they were dying of heart damage/ failure, and need transplants (which many got). I don't know that it's the right decision to give scarce organs to people with fatal underlying conditions. If organs were plentiful, it would be a whole different discussion.

I followed this case closely back then (along with other ones like Jahi) and I believe her own doctor testified at the hearing for the TRO that a successful transplant would get her 6 or 7 years. This was before she had two double lung transplants with extended criteria lungs. It was clear this would only buy her time but the whole public relations campaign caused the ignorant public to think this wee little girl was getting denied a long healthy life because of arbitrary reasons.

Just like Stokes played the race card. Everyone could see he wasn't a good candidate for a heart, yet he got one anyway.

Need an organ? Just orchestrate an organ grab through social media and spokespeople.

It makes me sick.

 

[K_Z]

There are some basic requirements that the medical system is justified setting down as a prerequisite for an organ recipient, and I think that making a judgement about a person's moral character is on the table.

A person's moral character is an indicator of how they will be able to manage a highly structured set of responsibilities that follow an organ transplant. It's reasonable to turn down certain people - an unmanaged alcoholic, or a person living a lifestyle on the dark side of the law. I see that as a prudent decision by the medical system.

We also regularly disqualify people with severe, poorly managed mental illness, for transplants. We probably would not consider a transplant in a patient with severe mental retardation, or even moderate dementia. We don't consider transplants for patients being treated for many illnesses and conditions. A non-compliant and criminal lifestyle is no different.

It's irrelevant to say, "well, he could grow up to be President of the United States if he gets the transplant." What's important is TODAY, how the patient and family TODAY can manage their illness and treatment. And YESTERDAY is the most predictive day to predict how someone will handle TOMORROW. We absolutely do have to consider how a family and patient are currently coping, and how that compares to how they coped and cooperated in the past, in order to make relevant and reliable predictions about future behavior. It's just that simple. IMO.

 

[jjenny]

At the time of the transplant, the recipient was only 15 years old. I don't know any teen that age who is capable of handling a highly structured medical regime on their own and physicians are not clairvoyant. That said, this kid didn't die two years later because the transplant failed, he died because he wrapped a car around a tree.

JMO

He already had trouble with the law at 15. He died because he continued on the same course he was on before the transplant.

 

[jjenny]

BBM. Well said, considering the teen's death has absolutely NOTHING to do with his heart. Ironically, last night's episode of Grey's Anatomy had a very similar theme. A teen shot during a robbery that killed two police officer brothers had a injury that destroyed his liver. The entire story was about compassion and second chances.

JMO

It has everything to do with his heart. If he didn't get a new heart, he wouldn't be out there allegedly trying to rob an elderly woman, or running over a pedestrian.

 

[jjenny]

Sarah Murnaghan is still dealing with broken feet and leg bones. Some of us have wondered (we privately discuss medical stories) if she is dealing with chronic rejection and is taking high does steroids. She is alive but her quality of life is questionable.

She has cystic fibrosis. Transplant is not a cure for cystic fibrosis. It was only going to prolong her life, not let her live a normal life. It succeeded in that regard.

 

[Hiandmighty]

It depends. Some do well and thrive and get back into life. Some languish with transplant disease and some die. Her parents argued that a transplant would allow her to be a kid again, to return to school, to grow up and get married. (Yes, they actually said get married)

Her family members specifically were quoted as saying a transplant would allow her to run up and down the halls of the hospital floor with days.

It makes me wonder if they were in the land of denial or if they were really led to believe it would be all pretty packages wrapped in bows.

Yes, for the transplant program, she is considered a successful statistic.

 

[Tulessa]

Maybe I am blinded by the fact that, I offered to donate half of my liver to my brother. After doing some tests, they said his veins would not hold up for ANY type of surgery. His drinking had destroyed them. Please, if you throw, make sure it's tomatoes, rocks hurt. I just feel like it's a heart wasted.

I hate even typing that, but it's the way I feel.

 

[joypath]

Almost "off topic" but essentially not: Even those undergoing gastric by-pass must demonstrate that they can be/will be compliant and fully understand the ramifications & limitations to/on their lives.
In any committee I've ever participated in (tho' it was in the "dark ages"), there had to be evidence of a support system for the transplant candidate, the candidate had to express a desire for the surgery, had to vocalize that he/she understood the immediate conditions to his/her lifestyle and also those of the future, those on-going "pesky" requirements of medications, testing protocols, lifestyle modifications and compliant follow-up.
The interactions of this young man with the legal community makes me suspect highly that 1. the organ committee was influenced highly by non-medical issues, 2. that the support system of immediate family was limited or non-existent and 3. that the recipient himself was reverting back to a lifestyle he CHOSE prior to his transplant and/or a lifestyle he CHOSE to emulate, holding it in high regard.

As others have stated, the issue of organ transplant is complex but there are protocols that should be followed, perhaps this occurred to shed light on a particular group/situation where a dramatic "housekeeping" needs to apply and to serve as a reminder to others.