"Quality of life" and people with cognitive disability

There's a series of posts up at Neonatal Doc's blog that discuss "quality of life" and babies with conditions known to cause significant cognitive disability, such as trisomy 13 and holoprosencephaly. The posts begin with Inappropriate and continue (so far) through Futility.

I'm not picking on Neonatal Doc; he (or she?) is certainly not the first doctor to automatically equate "cognitive disability" with "poor quality of life". Nor, unfortunately, the last.

However, as part of today's Futility post, Doc mentions that previous commenters have raised the issue of using quality of life as some kind of guide in making treatment decisions. Doc then goes on to say:

"It is my understanding of the laws in the U.S., though, that we are not allowed to use poor quality of life as a reason for withholding or withdrawing care. We cannot discriminate against people with impairments; withholding life support would constitute discrimination".

It appears that Doc is trying to say that it is illegal to withhold treatment based on a diagnosed condition (in other words, to use a particular diagnosis as the sole reason to withhold treatment). But that is not what Doc says. Doc that it would be discriminatory to withhold treatment from people with a "poor quality of life", then uses the example of people with "impairments". Doc, in other words, has equated "impairment" with "poor quality of life". He uses one to illustrate the other.

"Quality of life" discussions per se--as part of the decision making around end of life or treatment decisions--are not against the law. It is not discrimination to withhold life support from people with "impairments" on an individual basis.

This is not the same as using the "impairment" as the reason to withhold care. It is "discrimination" to pre-judge that people with "impairments", on the basis of that impairment--as a class--do not deserve life support or other treatments. It is, in other words, discriminatory to equate "impairment" with "poor quality of life".

Lots of people do this. That includes doctors and other health care professionals. That doesn't make it right.

Doc then discusses the issue of withholding care because it is "futile", and admits that often this terminology is simply a cover for the truth: the care is withheld because of "poor quality of life". As Doc explains:

"Eighty or ninety per cent of babies with Trisomy 13 or 18 die by age one year. They often die because they simply stop breathing; the respiratory center of their brain, responsible for regulating their breathing, doesn't work properly. They can also die because of other birth defects, such as serious heart problems. If a normal child were to stop breathing, we would begin support with a ventilator. This is not usually offered Trisomy 13 or 18 patients. We say we don't offer it because it would be futile; the baby would eventually die from another problem caused by the Trisomy. But the truth is, many of the Trisomy 13 and 18 children if put on a ventilator, if their heart defect were repaired, and a feeding tube placed, and anti-reflux surgery done, could possibly live for years. It would not, in my opinion, be a life of high quality (and I am not advocating it be done.) Most of these patients cannot even smile, let alone walk or talk or indicate their desires, but they would be alive. So when we withhold life support from them, are we really doing it because it would be futile, or because the quality of life would be so poor?"

Or, I might ask, are you doing it because you are prejudiced and cannot imagine such a life as worthy of life? You may not even realize this prejudice; it may be so automatic--this correlation in your mind of cognitive impairment and "poor quality of life"--that you can't separate the two concepts.

Try.

It's the information they obtain from medical providers--including neonatologists--that families use to make critical decisions in the early days of a baby's life. It's one thing to give honest appraisals of probable outcomes. It's one thing to give your explanation of Trisomy 13 or holoprosencephaly, including current life-expectancy data. It's even one thing to give your honest opinion about treatment, if you are directly asked.

It's another to pre-judge that a particular chromosomal anomaly will cause such a poor quality of life that the affected child is better off dead.

Doc apparently believes children with trisomy 13 or 18 don't have a high enough "quality of life" to benefit from life-prolonging procedures. I believe the families in this support group (for example) do not agree. Surely there is room to individualize decisions of such extreme importance, and not rule out the possibility of treatments for any baby?

50 years ago they weren't repairing esophogeal atresia in babies with Trisomy 21. 30 years ago babies with trisomy 21 weren't authorized for open heart repairs in some hospitals--excluded because they had "poor quality of life". Today, this would not happen and would be seen as wrong. Yet it's not the babies themselves who changed, it's society and medical science. Things change. Withholding treatment based on preconceived notions rather than individual decisions about individual babies leaves out a lot of options.

Life, for one thing.

mary, who is, after all, "Emily's mom"

Those non-compliant parents

I am on a personal mission to ban the use of the term "non-compliance" except in those instances when someone is under a court order or other legally required agreement to comply with something. Boy, we professionals are simply entirely too free with that term; we throw it around judgmentally too often before we have the facts.

True story:

A parent referred to my program with a very complex child with multiple disabilities. Reason for referral: non-compliance with medical treatments. In addition to his regular pediatrician, this child sees:

~~physical medicine
~~neurology
~~cardiology
~~gastroenterology
~~pediatric surgery (G-tube and post bowel surgery)
~~ophthalmology
~~pulmonology
~~PT
~~OT for "feeding therapy"
~~wheelchair clinic

In addition, his mother speaks no English, has no car, and only occasionally a phone. And...no Medicaid. Needs O2, feeding pump, dressings, AFOs...and more.

Now, I'm not going to bore you with all the details of a case manager's life, getting all this under control using interpreters and getting him on Medicaid, teaching mom how to call for transportation, make a schedule, what all this "stuff" means, how to get his durable medical equipment delivered, how to care for it, and all the other things I do all day. Mom and I have sort of gotten things together over the last couple of months. The medical and related hospital providers are now happy with my compliant mother.

On Monday, I received a call from the child's school, where he is enrolled in a special education program. Seems he has been missing an awful lot of school, and mom has been telling them "he's been going to the doctors"-which, with so many absences, they find hard to believe.

Mom is now, in short, non-compliant from an educator's point of view.

Just a little window on the world of parents raising complex children with special health care needs.

mary

Why no "Advance for Doctors"?

There's a ubiquitous magazine for "health care professionals" out there in the US, published by "regions", with different content for different kinds of professionals. I myself get the "Advance for Nurses" for Maryland, Virginia and Delaware, which I assume is the same magazine with targeted ads for my geographical area. It's free, paid for apparently by advertisement revenue alone.

Some of the content is surprisingly good, actually. It's almost embarrassing to admit that.

There is an Advance for several different professions, including audiologists, nurses, imaging, respiratory care, nurse practitioners, and physician assistants. There is even an Advance for "Providers of Post Acute Care".

There is, however, no Advance for doctors.

Too bad, because you all are missing the nifty "Advance Healthcare Shop for Gear, Gadgets and Gifts"! You, too, could "stand out from the crowd" with "unique neck ties" and "badge holders". Or the unisex tee with the logo: "Nursing is not just a duty, but a privilege". How about a camisole top with shelf bra, featuring "RN" heart logo? And the tee with the confusing motto: "Nursing: The Science Of Medicine, The Art Of Caring" (can't we have the science, too?).

Not to mention the Betty Boop scrubs and socks.

Now seriously. There is a thoughtful post over at Emergiblog about just this subject: the deplorable way some nurses dress at work. All right, I'm an old curmudgeon. But I tell you ladies (and gentlemen, you're not excused either), you can't be taken seriously as a professional if you dress in Betty Boop socks. Sorry. This is not a "generation" thing. This is not "old baby boomer vs. Young Generation".

If you want to be taken seriously, dress seriously. Maybe it really is time to bring back caps.

Mine's in some box or other around here somewhere...

:-)

mary

The gender gap in science

Here's an interesting article by Peter Lawrence of the Medical Research Council Laboratory of Molecular Biology, Cambridge, about the gender gap in scientific fields:

Among biomedical students in Europe and in the United States, there are similar numbers of males and females, suggesting perhaps that this subject is equally well suited to both sexes. But with higher and higher rank, the proportion of women falls inexorably—full professors are only about 10% female. Women drop out steadily, and many of them have demonstrated high ability. There is plenty of evidence for similar trends in different branches of science. For example, at the Laboratory of Molecular Biology in Cambridge, UK, where I work, the gender ratio of graduate students is currently 43 male to 35 female, yet the ratio of group leaders is 56 male to 6 female.

Lawrence cites Simon Baron-Cohen's research into gender differences, and describes some average characteristics of the female brain and the male brain, which he believes are strongly dependent on biology and genetics:

Baron-Cohen presents evidence that males on average are biologically predisposed to systemise, to analyse, and to be more forgetful of others, while females on average are innately designed to empathise, to communicate, and to care for others. Males tend to think narrowly and obsess, while females think broadly, taking into account balancing arguments. Classifying individuals in general terms, he concludes that among men, about 60% have a male brain, 20% have a balanced brain, and 20% have a female brain. Women show the inverse figures, with some 60% having a female brain.

Apparently, Science considered this article for several months but declined to publish it, causing a minor "eruption" over the issue in the scientific community (or so the Daily Telegraph says).

I am not sure of the research into all this, so obviously not sure how correct all the assumptions are. But I am persuaded not only by this article but by life experience to think that women and men-while equally valuable and intelligent-are different, think differently, and value different kinds of human relationships.

Maybe this explains some of the overwhelmingly female presence in nursing and elementary education. Often we see this explained as cultural bias, but I wonder how much might simply be due to "the female brain"? That is, men may still rule out nursing and elementary education due to some perceived cultural bias, but women are probably often attracted to nursing and elementary education because of something implicit in those fields.

mary

Mr. Bush's fantastical HSA

"DUBLIN, Ohio, Feb. 15 — President Bush campaigned for his plan to expand health savings accounts on Wednesday here at the headquarters of the Wendy's fast-food chain, declaring that his proposals were not just for the wealthy and would help some of the 45 million Americans who remain uninsured.

In an hourlong speech in one of the most politically troublesome states for Republicans in this year's midterm elections, Mr. Bush took on critics of his plan, who say that poor or underemployed people cannot afford the accounts.

"It's kind of basically saying, 'If you're not making a lot of money, you can't make decisions for yourself,' " Mr. Bush told Wendy's employees assembled in the company's lobby. "That's kind of a Washington attitude, isn't it. 'We'll decide for you, you can't figure it out yourself.' I think a lot of folks here at Wendy's would argue that point of view is just simply backwards and not true."

Under current law, people can open health savings accounts only if they first enroll in high-deductible health insurance plans to cover catastrophic costs, which require an individual to pay at least the first $1,050 of annual medical bills..."



Don't people at Wendy's tend to make minimum wage? I'm trying to figure out how any of them could fund an HSA...

Maybe I'm missing something. Those of us in practice in the field are often accused of misunderstanding the issues.

mary

The baby goes to foster care

The little complicated baby I wrote about in December has gone to foster care. How short and sweet that sentence looks on the page.

For the last week I have been awake in the still hours of early morning, long before my alarm. In the dark, in the solitude of my quiet house, surrounded by my sleeping family, I think about the baby. Is she frightened in her new place, with its new smells and noises and big new crib? Has she gotten used to her foster mom's voice and arms and can she find comfort when she is restless and little and missing the familiar sound of home?

The baby was removed because of concerns about parental ability to assure adequate medical care: missed appointments, poor decision making, refusing to answer the door when home health knocked. She was not removed because no one loved her. People surely loved her. In the midst of the chaos that defined her home, people held her and rocked her and kissed her little feet and hands.

That's not enough. Love is not enough.

It is very easy and entirely correct to enact laws making reporting suspected abuse and neglect mandatory for health-care providers. That I had a hand in the eventual removal of a loved baby from an incompetent parent is entirely within the realm of possibility for all such reporting. It goes with the territory. I don't make the decision to remove: that is the judge's responsibility. But I accept that my initial call set the decision in motion, that I have responsibility and believe me, it is weighing deeply on my soul. I understand that I did the right thing. I know I made the ethical decision, and acted in good faith and I have discussed this all with my coworkers and with the social workers.

And God.

The baby is safe and in a very good foster home. The foster mom will make all her appointments and keep a close eye on her weight and allow the home health team in to see her. She'll get her PT and her feeding therapies, and get to the cardiologist, and get enrolled in special ed preschool. And all those things on my checklist that need to get done, will get done.

And mom will attend her required parenting classes, and get court-ordered therapy, and get a job. And find a place to live. And clean up her act in general. Or that is my hope, anyway.

But out there right now, probably awake in her own bed in the still hours of early morning, a mom is not holding her baby. A baby she loved but could not care for-but nevertheless a baby who misses mom's arms as much as mom's arms miss that baby.

I ask God to let me start to feel what my head tells me: it was the right thing to do.

mary

Grand Rounds

Grand Rounds is a weekly compilation of "medical" (or health related) blogs. It is a nifty way to see lots of new and experienced bloggers talking about all kinds of things that influence health. In particular, it is a window on medical (and allied health) practice. There are multiple thoughtful practitioners out there, many of them blogging, some of them being featured weekly on Grand Rounds.

Anyway, check it out, readers. I know you are there, I check my statcounter every day!

:-)

mary

Abandoned witnessing walls

Opacity is a site devoted to "urban exploration". Let me say I am not a particular fan of trespassing, and know nothing about urban exploration except what is found at this web site. Opacity came up on a Google search for "Pennhurst".

However, the picture galleries on this web site are the most truly fascinating thing I have seen for a long, long time. So many of the ruins the photographer has explored are state hospitals for the insane, or the "feeble minded". So much was left behind in some of the abandoned hospitals that it leaves the impression of instant abandonment-as though the inmates simply vanished into thin air. There are crates full of baby bottles left at Fuller State Hospital, and Chris and Tyrone left their art projects behind when they went...where?

The iron lungs abandoned at Lindon State Hospital, still bearing hand written messages to nursing staff who, by the time the last lung was in use, must have become unused to such technology. Where did the people go, who once spent their days in the lungs?

The cribs and abandoned toys of Pennhurst.

I don't know which photograph haunts me the most.

mary

Think you're not biased? Think again.

Project Implicit offers some fascinating research on implicit bias, including some demonstration tests. Think you are not prejudiced about black/white, able/disabled, old/young, etc? Try some tests. See how you do.

Personally, I have a feeling it is more important to acknowledge you have biases and strive to neutralize pre-judgements than to try to pretend you don't have biases at all.

mary

New Liberian President breaks rape taboo

This is a brave woman.

“After being sworn in on Monday, Mrs Johnson-Sirleaf stood up and said something that galvanised her audience:

"I know of the struggle because I have been a part of it," she said. "I recall the inhumanity of confinement, the terror of attempted rape."

Violence against women and girls is endemic in most societies (which is a sad thing to say, being a woman and mother of three daughters). It is a particularly appalling consequence of war and conflict around the globe

~~~

From the World Health Organization:

Violence Against Women and HIV/AIDS: Critical Intersections: Sexual violence in conflict settings and the risk of HIV

Why focus on violence against women in conflict settings and HIV?

"The militia at the barriers said they would protect me, but instead they kept me and raped me in their homes. One militia member would keep me for two or three days and then another would choose me… I managed to flee Kigali and when I returned, I learnt that my husband had been killed." (Survivor of the Rwandan genocide, HIV positive woman from Kigali)

In conflict situations, women and girls are at greatly increased risk of physical and sexual violence. Many women and girls are subjected to rape including gang rape, forced marriages with enemy soldiers, sexual slavery, and other forms of violence (being forced to witness others being raped, mutilations, etc.). Many have fled their homes, have lost their families and livelihoods, and may have little or no access to health care. All these factors create conditions in which women and girls’ vulnerability to HIV is disproportionately increased.

Violence against women and girls has been a feature of all recent conflicts, the ongoing one in the Darfur region of Sudan as well as in the former Yugoslavia, Democratic Republic of Congo, Rwanda, Sierra Leone, Liberia, northern Uganda, and Chechnya (Russian Federation). In many of these conflicts, some of which have been regarded as ethnic cleansing, rape has been and is used as a deliberate strategy to brutalize and humiliate civilians and as a weapon of war or political power.

For more information on violence against women, see this WHO page.

~~~

“More and more of the world is being sucked into a desolate moral vacuum”, according to a UNICEF report:

Women and girls in particular experience conflict and displacement in different ways from men because of the gender division of roles and responsibilities.

Increasingly, modern warfare is wreaking havoc on the lives of women and girls, and on the health and educational services that are key to family and community survival and development.

"Nothing was spared, held sacred or protected", says a new United Nations report by Graça Machel, the Secretary-General's Expert on the Impact of Armed Conflict on Children. "More and more of the world is being sucked into a desolate moral vacuum" in which civilians rather than soldiers are the main targets in war.

~~~

This kind of endemic violence has far-reaching consequences, and shapes the future of the world we all inhabit, changes societies, families and communities in many harmful ways, and makes a living hell for countless numbers of victims every minute of every day here on earth. The CDC describes the consequences of sexual violence here.

~~~

For helpful links regarding the serious public health issue for all of us (individual victims or not), there is a good FAQ page up at the INFO Project website(a project of the Johns Hopkins Bloomberg School of Public Health).

~~~

It’s not “them”. It’s not “over there”. Violence against women shapes families and communities forever. It’s us it affects, us it diminishes, us it hurts. It’s us-regardless of gender, race, or socioeconomic class. Until the violence stops, we will all continue to be victims.

mary

Life with Emily

Emily (girl of a thousand diagnoses and 47, XX, +21) had a medical emergency this morning at 4 a.m.

Let me rephrase that: Emily thought she had a medical emergency at 4 a.m.

In the dark before dawn she came in to shake me awake. "Mom!" she said, "Mom! Wake up! There's something wrong with me!".

Ordinarily words to make a mom's blood run cold. But I have lived with Emily for a while.

"What's wrong with you, Em?", I said blearily.

"I'm sneezing!" she replied seriously.

I just sighed and rubbed my hand over my face.

This evening, after a long LONG day and a late meeting, I came home to find Emily waiting for me with this news:

"I must have to stay home tomorrow, Mom, because I have been sneezing again and you know what that does to me!"

I don't have a clue, really. I didn't let on, though.

:-)

mary

What draws a nurse to this job?

What draws a nurse like Luwana to this job, and why does she stay? How does she avoid burnout?

While some nurses are drawn to this job because there’s reason to believe this sort of work can make a long-term difference, what keeps them in it, I think, is the other nurses.
~~~~~Q&A "Children of the Bayou" (New Yorker Magazine online)

Very interesting article in this month's New Yorker describing a "nurse visitor" program in Louisiana. This particular program is intended for young, first time moms and it aims to both improve children's outcomes and decrease child abuse. Like most programs it is hit or miss at times, but there is evidence it is making a difference. I recommend this article if you are interested in seeing a working "home visitor" program that appears to be helping at least some young moms and babies.

Also if you would like a factual and non-sensational description of what it's like to visit impoverished homes, with the attendant drug abuse and crime on the periphery-in the midst of which live little babies and developing children, the future of America.

Whether or not you have access to the article, the Q&A is available at the New Yorker web site. The dedication and stick-to-it spirit of a fellow nurse can always bring a gleam of pride to my eye.

The article describes a weekly team meeting held by the nurses, in which they describe new and current clients. Like most home-based or community-based case managers, these nurses must get pretty lonely driving around poor backroads by themselves. I think the author has hit on an important factor in why they stay: each other. The support and understanding that another "home-visitor" can give (not to mention the shared perspective) is so vital. Only another person in the same kind of unique situation of counselor-care manager-teacher-role model can hear the concurrent respect and despair when you describe a particular situation, for one thing.

And call you on the carpet with authority, when they don't hear the respect. And mean it.

mary

Balancing federal budget on the backs of the poor

Let's hear it for the US Congress, who has decided that so many poor people are benefiting from Medicaid that it must be cut. Our pockets are being assaulted too heavily by these poor and disabled citizens and by GOD something must be done.

So they have now given states the right to cut services and eligibility; to require copayments from people who already can't pay their bills because "this will reduce utilization" (watch out, all you ERs); to decimate EPSDT requirements; to offer the poor "health savings plans" (can you figure yours out? If so, can you come explain them to my impoverished families who have never had any practice budgeting money? Thanks.). In short, they are holding poor people responsible for using the entitlement they were granted and actually used. Fancy that.

But in Congress-speak, they have said that while they are cutting Medicaid, they aren't really cutting Medicaid. They are leaving it up to the states to decide what to do.

So let's see: my state (Virginia) is already notoriously stingy in benefits to poor and disabled people. Don't believe me, check out any state ranking for expenditures and/or services to this population. So stingy, in fact, that when a call comes into my program from an out of state family with a child whose special health care needs are being met adequately in their current state of residence, we tell them don't! Don't move to Virginia.

I cannot imagine Virginia seeing the opportunity to cut benefits and not doing so.

Well, I don't have any easy answers, but I know this from experience: if you push poor and disabled people out of Medicaid and primary care, they will simply show up in your ERs as uninsured poor people. We have poor people who get sick in America. This should be a shock to someone?

We are going to pay for helping poor people with health care problems one way or another, and decreasing use of primary preventative care by removing the ability to pay for it, seems counterintuitive to me.

But what do I know?

The other alternative might be to criminalize being poor in America, and get these darn people off the street and into...somewhere. Or shoot them all. That would certainly solve the Medicaid budget crisis.

Maybe I'll bring this up to the President one day, when he's vacationing on his ranch.

mary

Delivering sad news: how to talk to parents

Every pediatric pratitioner at one time or another has to tell parents bad news about their beloved child. It goes with the territory. But just accepting the ethical responsibility of it doesn't make the doing of it any easier. Since I've worked in the "special needs" area for many years, I've seen and been told about this experience many times. Based on my experience on both sides of the bed (nurse and parent) I can give you a few hints.

First, I'll tell you how not to do it.

Neurologist standing at clinic exam table: Well, Mr. and Mrs. Smith, we have all the test results. Your son unfortunately has Lennox-Gastaut. Have you ever heard of that? Well, it is not very good. It will never get better and will probably get worse. There is no very good treatment at this time.

Please make a follow up appointment with my nurse. Let's see him again in three months.

Now, the better way:

1) Sit down, if possible. Attempt to be on some kind of equal footing with the human beings with whom you are about to discuss something painful. Not only will the parents see you as more compassionate, you will remind yourself of your own essential humanity.

2) Be honest. Truth is always better than prevarication. Never say more than you know. But say what you know.

3) Say, "I don't know" when you, in fact, don't. Don't bluff. This applies to both diagnosis and prognosis.

4) At all times remember that you are there to deliver a diagnosis or prognosis. Your aim is to be truthful in doing so. Your aim is not to destroy hopes or dreams. This may be a side effect of what you have to say, but it is not your goal. It is not why you are having the discussion.

5) So don't destroy hopes or dreams on purpose. They are not your hopes or dreams. You may not agree with them. You may think them unrealistic. Short of harm to the child in question, if the dreams are not interfering with your care, they are not your business. There may come a time when you will have to address directly those unrealistic hopes and dreams. If immediate action is needed, the time may be concurrent with the bad news you have just delivered. If not, the discussion can wait.

6) No one has unlimited time to spend with patients anymore, but allow parents time to react and ask questions. Be prepared ahead of time for the diagnoses that are most common to your area of practice. Be especially prepared to refer parents to local or national groups offering support and guidance. Offer to reschedule an appointment on another day to review their thoughts and what they have learned, and answer questions that will come up.

7) Remember we live in the Internet Age. Parents are going to look up what you tell them, by and large. This is not a reflection on you; stop taking it personally.

8) Be prepared for your own shortcomings and mistakes. We are none of us perfect. We are all human. Practice in talking to parents about sad things only makes the doing of it easier; it doesn't make the sadness of it go away. There isn't any perfect way to deliver sad news. But there are better ways.

mary

U.S. primary care near collapse, physicians warn

An alarming thought from the American College of Physicians. The report released January 30, entitled: The Impending Collapse of Primary Care Medicine and Its Implications for the State of the Nation’s Health Care, should be a concern to everyone looking for primary care for themselves or their clients.

The accompanying proposal guidelines: The Advanced Medical Home: A Patient-Centered, Physician-Guided Model of Health Care are also found on the same page.

For the population of Children and Youth with Special Health Care Needs (CYSHCN) the push has been on for several years to encourage "Medical Homes" and care for these complex children in the community, and in theory, this would be the best way to care for them. But I know in practice it is already hard to find primary care pediatricians for some of my clients (since everything depends on the almighty HMO or MCO). I imagine all of them leaving pediatric care at 21 to enter into adult primary care and increase the problems of an already crashing medical care system.

I have to tip my hat at the struggling primary care docs (and advanced practice nurses, too, who are doing a lot of this primary care in my area). When my little clients have a good PCP, their quality of life is markedly improved. Here's my prayer for a solution and my hope we can avert the looming crisis.

mary