Hospital denies life saving transplant to child because of special needs

[LemonAndLime]

I think the problem is that they are assessing the girl as they would assess someone without learning disabilities. I use the term LD because her in the UK, using the words “Mental retardation” is considered offensive so LD professionals are not allowed to use it.

Not only that, but people with LD have lower recovery rates and always have health problems. This makes the mortality rate much higher.

The problem then is that if the surgeon did operate knowing that the chances of recovery from the surgery are low (and against hospital policy), it could mean the end of their career.

 

[seekerz]

The problem then is that if the surgeon did operate knowing that the chances of recovery from the surgery are low (and against hospital policy), it could mean the end of their career.

Not necessarily. If the benefits and risks are carefully discussed beforehand, and accepted by all, the risk of litigation is substantially decreased.

Beside, medical risks are not what were reported as the issue. For example, a social worker is reported to have asked who was going to give her her meds 30 yrs from now (I would assume the same people who would be charged with her general care and welfare).

The only sympathy I have for the hospital, is that their hands are tied in giving their side of the story. It could be that we have not be given all the pertinent medical facts, even while the parents’ perspective is that her cognitive status is what is preventing the transplant.

 

[LemonAndLime]

Not necessarily. If the benefits and risks are carefully discussed beforehand, and accepted by all, the risk of litigation is substantially decreased.

Beside, medical risks are not what were reported as the issue. For example, a social worker is reported to have asked who was going to give her her meds 30 yrs from now (I would assume the same people who would be charged with her general care and welfare).

The only sympathy I have for the hospital, is that their hands are tied in giving their side of the story. It could be that we have not be given all the pertinent medical facts, even while the parents’ perspective is that her cognitive status is what is preventing the transplant.

The parents/relatives of a patient sometimes only hear what they wish to hear (and who can blame them when they have bad news?) and a hospital/doctor/surgeon is not allowed to give their side of the story because of privacy laws.

The most important thing I’ve learned from this is that the family seem to imply that their child is fit and healthy apart from the fact they need this HUGE transplant and that they have a disability. This whole thing seems to me that a big chunk of information is missing from this.

Also, if I was the surgeon and according to hospital policy I shouldn’t operate (and my training said I shouldn’t) then I won’t. You have to protect your job, your career and your integrity, and lets not forget - you have to protect yourself from angry relatives too.

 

[Mrs_Sally]

Do all learning disabilities come with other health issues? And even so, we continue to give treatments to other people for condition A when they also have condition B. It does seem that the issue is that a child with MR just isn’t normal and so therefore less human and less worthy of care.

Glad to see that the hospital is changing their minds - especially since the immediate family has so very much support from extended family to take care of her (and of the donor).

OT: Did anyone else think it very odd for a hospital to use it’s initials when they spell out “chop”?

 

[seekerz]

The parents/relatives of a patient sometimes only hear what they wish to hear (and who can blame them when they have bad news?) and a hospital/doctor/surgeon is not allowed to give their side of the story because of privacy laws.

The most important thing I’ve learned from this is that the family seem to imply that their child is fit and healthy apart from the fact they need this HUGE transplant and that they have a disability. This whole thing seems to me that a big chunk of information is missing from this.

Also, if I was the surgeon and according to hospital policy I shouldn’t operate (and my training said I shouldn’t) then I won’t. You have to protect your job, your career and your integrity, and lets not forget - you have to protect yourself from angry relatives too.

Self-protection should be a secondary issue where a child’s life is concerned. At any rate, litigation risk tends to be overstated, in my experience, and providers sometimes take risks when it benefits them. I do agree that we don’t know the entire story, though.

 

[LemonAndLime]

Self-protection should be a secondary issue where a child’s life is concerned.

That’s not how real life or the law works. Perhaps in an emergency situation, but not with this. In an emergency medical professionals are permitted to ignore safety advice and many procedures - for example, they can ignore correct lifting and handling procedures in the event of a fire.

Not only that, but a surgeon operates on maybe up to 10 people a day. Are they really going to throw their entire career out of the window to operate (against the laws of their profession and employer) on one girl? Maybe even against their own judgement?

At any rate, litigation risk tends to be overstated, in my experience, and providers sometimes take risks when it benefits them. I do agree that we don’t know the entire story, though.

My friend, look a little closer. The litagation risk has been proven by the family’s response to being told no.

 

[seekerz]

My friend, look a little closer. The litagation risk has been proven by the family’s response to being told no.

I don’t agree. Read this: yourlife.usatoday.com/parenting-family/special-needs/story/2012-01-16/Team-Amelia-backs-transplant-for-special-needs-child/52603482/1.

At least the way it’s told in USA TODAY, the response from the disabled community is what has propelled this issue to the forefront. And even if you were right in interpreting their stance as prone to litigation, I’d say they’d be more likely to sue if she didn’t have the surgery than if she did.

 

[CDB1718]

I think the problem is that they are assessing the girl as they would assess someone without learning disabilities. I use the term LD because her in the UK, using the words “Mental retardation” is considered offensive so LD professionals are not allowed to use it.

Not only that, but people with LD have lower recovery rates and always have health problems. This makes the mortality rate much higher.

The problem then is that if the surgeon did operate knowing that the chances of recovery from the surgery are low (and against hospital policy), it could mean the end of their career.

Mental retardation is also considered offensive here, but it hasn’t been phased out of the medical jargon yet.

Your point about mortality rates being higher is false. Will you please re-read post #2 in this thread? The professionals who do transplants officially say that is one of the four main excuses used for denying those with an intellectual disability a transplant and it is a belief, but “not reality.” They say it should not be used as a criteria.

The most important thing I’ve learned from this is that the family seem to imply that their child is fit and healthy apart from the fact they need this HUGE transplant and that they have a disability. This whole thing seems to me that a big chunk of information is missing from this.

I take away that the family said she was denied for no reason other than her intellectual disability. They clarified that there was no medical reason and were assured that her intellectual disability was enough to disqualify her. The medical professionals supported this with examples about her perceived quality of life with an intellectual disability, her reduced communication due to her ID, her inability to be an independent adult because of her ID… The issue is that she was solely denied a life-saving procedure because of her intellectual disability. No where do I see them claim that she has no other medical issues.

Amelia’s situation has brought to light that this is common thinking among transplant doctors. So much so, that their official journals write articles to tell them to stop it. This doctor didn’t take that message to heart and perpetuated their culture which is full of erroneous beliefs about quality of life and non-compliance in people with ID, but which science has shown is wrong. Further, this doctor and social worker were not just earnestly misguided, but willfully belligerent. The family shared the story in their small support network with no idea it would go further. The community is who brought it to the attention of the world. And rightfully so as the culture which you also perpetuate needs to be educated so it can change.

 

[seekerz]

Mental retardation is also considered offensive here, but it hasn’t been phased out of the medical jargon yet.

Your point about mortality rates being higher is false. Will you please re-read post #2 in this thread? The professionals who do transplants officially say that is one of the four main excuses used for denying those with an intellectual disability a transplant and it is a belief, but “not reality.” They say it should not be used as a criteria.

I take away that the family said she was denied for no reason other than her intellectual disability. They clarified that there was no medical reason and were assured that her intellectual disability was enough to disqualify her. The medical professionals supported this with examples about her perceived quality of life with an intellectual disability, her reduced communication due to her ID, her inability to be an independent adult because of her ID… The issue is that she was solely denied a life-saving procedure because of her intellectual disability. No where do I see them claim that she has no other medical issues.

Amelia’s situation has brought to light that this is common thinking among transplant doctors. So much so, that their official journals write articles to tell them to stop it. This doctor didn’t take that message to heart and perpetuated their culture which is full of erroneous beliefs about quality of life and non-compliance in people with ID, but which science has shown is wrong. Further, this doctor and social worker were not just earnestly misguided, but willfully belligerent. The family shared the story in their small support network with no idea it would go further. The community is who brought it to the attention of the world. And rightfully so as the culture which you also perpetuate needs to be educated so it can change.

I tend to agree with you except that all we know of the events is what the parents perceived, which, given the emotion surrounding the whole scenario, may not necessarily be complete or totally reflective of all that transpired. Without further details of the child’s medical problems, I support her right to be transplanted based on the information given, but cannot know for certain that there aren’t other concerns which should be considered. For all I know, those parents didn’t hear a word after reading ‘mental retardation’ on her chart.

As for the terminology, I think it was a medical term that became used in society as a put-down and therefore has become unacceptable. Any substitute wording runs the same risk, but given the connotations, it is probably a good idea if this one gets consigned to the ash heap.

 

[OrdinaryMelkite]

The simple fact is the hospital is now assuming the power of life and death. It is taking the authority away from God. At this point, they, humans, are making the decision of who lives and who dies.

 

[Ridgerunner]

Refusal of care for those with chronic conditions (and developmental disability is one) is the “dark side” of the new emphasis on “prevention” (which is medical care for the well). Reimbursement rates for “well care” have been made better overall than rates for treatment of patients with chronic conditions. That’s why a lot of doctors and clinics are dumping those with developmental disabilities. They simply require more attention, more time and more care than well people do.

 

[seekerz]

Refusal of care for those with chronic conditions (and developmental disability is one) is the “dark side” of the new emphasis on “prevention” (which is medical care for the well). Reimbursement rates for “well care” have been made better overall than rates for treatment of patients with chronic conditions. That’s why a lot of doctors and clinics are dumping those with developmental disabilities. They simply require more attention, more time and more care than well people do.

I don’t see it as a ‘dark side’ at all: for too long reimbursement has favored sickness, interventions and procedures over prevention. I personally know enough people who would go for a ‘well-check’ and get pushed into all sorts of procedures and labs for investigation of occasional minor ailments which were elicited from them by running through a checklist. In some practices, all that is needed for insured people to get a ‘procedure’ recommended is a mere whisper of some magic diagnosis code which the insurance company will accept as justification, while the uninsured only get the same work-up if they really have a problem.

Providers everywhere need to be really honest with themselves. That kind of behavior prioritised reimbursement of sickness, rather than of health maintenance and the scale needed tipping back a bit in the other direction. That’s all. Nothing to do with the decreased value placed on the lives of people with decreased cognitive function - those pervasive negative attitudes are decades old, if not much, much older.

At some point health care has to be about health and care and not so much about the right to make money.

 

[Ridgerunner]

I don’t see it as a ‘dark side’ at all: for too long reimbursement has favored sickness, interventions and procedures over prevention. .

You sure would see it as the “dark side” if you had a chronic illness and got dumped in favor of well people because the reimbursement for “well person” care (which is not care at all) is so much better than dealing with people who are actually sick.

It isn’t just the insurance companies, which adapt their rates to Medicare rate anyway. (I used to negotiate insurer deals, and I know.) It’s Medicaid and medicare as well. My wife arranges care for people with developmental disabilities, and it gets harder and harder to get care for them because (surprise, surprise) they often have a lot of health problems, and due to changes in reimbursement, it just doesn’t pay as well to take care of sick people as it does to play “preventive medicine” games with well people.

Personally, I think all this “preventive care” emphasis is just wrong. Rarely is it anything but routine evaluation. Taking care of sick people is harder and requires a lot more of the provider. To me, it’s another "cash for clunkers’ approach, which subsidized middle class people who didn’t need the program and destroyed vehicles needed by the poor…all done in the name of an ideology that favors those that don’t need it and dumps those in real need on their heads.

 

[LemonAndLime]

I tend to agree with you except that all we know of the events is what the parents perceived, which, given the emotion surrounding the whole scenario, may not necessarily be complete or totally reflective of all that transpired. Without further details of the child’s medical problems, I support her right to be transplanted based on the information given, but cannot know for certain that there aren’t other concerns which should be considered. For all I know, those parents didn’t hear a word after reading ‘mental retardation’ on her chart.

As for the terminology, I think it was a medical term that became used in society as a put-down and therefore has become unacceptable. Any substitute wording runs the same risk, but given the connotations, it is probably a good idea if this one gets consigned to the ash heap.

Exactly my point.

Also, it is a fact that people with learning difficulties are more unhealthy than the rest of the population. Most have epilepsy. Most suffer from obesity, and have a difficult medication regime.

There are many physical health factors associated with developmental disabilities. For some specific syndromes and diagnoses, these are inherent (such as poor heart function in people with Down syndrome); however lack of access to health services and lack of understanding by medical professionals is also a major contributing factor. People with severe communication difficulties find it difficult to articulate their health needs, and without adequate support and education might not recognize ill health.** Epilepsy, sensory problems (such as poor vision and hearing), obesity and poor dental health are over-represented in this population.[5] Life expectancy among people with developmental disabilities as a group is estimated at 20 years below average**, although this is improving with advancements in adaptive and medical technologies, and as people are leading healthier, more fulfilling lives,[6] and some conditions (such as Freeman-Sheldon syndrome) do not impact life expectancy.

en.wikipedia.org/wiki/Developmental_disability#Physical_health_issues

The person quoted a while ago who said it was a myth that people with learning disabilities have the same health as the rest of the population was talking a load of trash.

 

[SamH]

You sure would see it as the “dark side” if you had a chronic illness and got dumped in favor of well people because the reimbursement for “well person” care (which is not care at all) is so much better than dealing with people who are actually sick…

Agreed.

The UK’s system of limited visits to specialist and limited treatment of difficult to treat diseases is a prime example. I’ve been shocked at the standard of care children with epilepsy receive there and in the Canada. There are nine hospitals in all of the UK that can administer the Keto Diet - there are 4 in the state of Kansas alone that can administer the diet. If you don’t make the list in England you take your child home and surf the web hoping someone will send you a diet menu from the US to use to treat your child.

 

[seekerz]

You sure would see it as the “dark side” if you had a chronic illness and got dumped in favor of well people because the reimbursement for “well person” care (which is not care at all) is so much better than dealing with people who are actually sick.

It isn’t just the insurance companies, which adapt their rates to Medicare rate anyway. (I used to negotiate insurer deals, and I know.) It’s Medicaid and medicare as well. My wife arranges care for people with developmental disabilities, and it gets harder and harder to get care for them because (surprise, surprise) they often have a lot of health problems, and due to changes in reimbursement, it just doesn’t pay as well to take care of sick people as it does to play “preventive medicine” games with well people.

Personally, I think all this “preventive care” emphasis is just wrong. Rarely is it anything but routine evaluation. Taking care of sick people is harder and requires a lot more of the provider. To me, it’s another "cash for clunkers’ approach, which subsidized middle class people who didn’t need the program and destroyed vehicles needed by the poor…all done in the name of an ideology that favors those that don’t need it and dumps those in real need on their heads.

This is not about political ideology, it is a power play among doctors: primary care physicians versus specialists and I say shame on anyone who ‘dumps a sick person’ no matter what excuse they use. Most doctors I know personally, regardless of their faults, would not ‘dump’ a patient over reimbursement.

But if I have to go by the conservative ideology prevalent on this forum, there really shouldn’t be a problem if the chronically ill have no access to routine care: emergency rooms cannot refuse them care, or so I’ve been oft reminded…(Let them eat cake?)

 

[LemonAndLime]

Agreed.

The UK’s system of limited visits to specialist and limited treatment of difficult to treat diseases is a prime example. I’ve been shocked at the standard of care children with epilepsy receive there and in the Canada. There are nine hospitals in all of the UK that can administer the Keto Diet - there are 4 in the state of Kansas alone that can administer the diet. If you don’t make the list in England you take your child home and surf the web hoping someone will send you a diet menu from the US to use to treat your child.

The NHS works by only including treatments if they work effectively (and are cost effective in comparison to how well they work) after being peer-reviewed. If this “Keto Diet” was so awesome then it would be included. Seems a bit unfair to judge the entire NHS on one treatment.

Limited visits to specialists? How are they limited?

I could equally say - if you’re in the US and your medical insurance won’t cover it and you haven’t got any money, then you gotta sit at home and surf the web hoping some charity will pay for it for you.

 

[seekerz]

Agreed.

The UK’s system of limited visits to specialist and limited treatment of difficult to treat diseases is a prime example. I’ve been shocked at the standard of care children with epilepsy receive there and in the Canada. There are nine hospitals in all of the UK that can administer the Keto Diet - there are 4 in the state of Kansas alone that can administer the diet. If you don’t make the list in England you take your child home and surf the web hoping someone will send you a diet menu from the US to use to treat your child.

And the Keto diet is the only treatment option for epilepsy? Maybe the British simply don’t have as much confidence in it or it isn’t as popular with parents; who knows? The fact is, when the numbers are compared, health care in all developed countries is similar in quality - the only difference is that America pays more.

 

[seekerz]

The NHS works by only including treatments if they work effectively (and are cost effective in comparison to how well they work) after being peer-reviewed. If this “Keto Diet” was so awesome then it would be included. Seems a bit unfair to judge the entire NHS on one treatment.

Limited visits to specialists? How are they limited?

I could equally say - if you’re in the US and your medical insurance won’t cover it and you haven’t got any money, then you gotta sit at home and surf the web hoping some charity will pay for it for you.

Exactly.

 

[LemonAndLime]

And the Keto diet is the only treatment option for epilepsy? Maybe the British simply don’t have as much confidence in it or it isn’t as popular with parents; who knows? The fact is, when the numbers are compared, health care in all developed countries is similar in quality - the only difference is that America pays more.

Ironically, the American government spends more tax dollars on their healthcare system per person than the British government does on the NHS (in dollars, per person). So it always makes me laugh when people say that they don’t want their taxes being taken for paying for someone elses healthcare like they do in Britain, because quite frankly it’s happening already - and you’re getting less than I am for it.