Charles Murray's Plan to Replace the Welfare State

One of the difficult problems of being in the practice side of things (as opposed to the policy side) is the lack of credibility it brings to your arguments.

Why is this?

For instance, in reading Mr. Murray's fascinating proposal to just give every American $10,000.00 dollars a year in lieu of "social services", in order to address the inequities inherent in the welfare systems we have cobbled together, a person practicing in the field of pediatric special needs is wont to say: "hello! most of my kids spend that much in one month!" and go on about her business.

Of course, Mr. Murray and other policy types simply accuse practitioners like me of being beneficiaries ourselves of the welfare state, in the form of salaries and etc. So our voices (being the interested parties we are) don't count.

Well, probably because I'm a nurse and that guarantees a good amount of job security (if they close down the welfare state I'm pretty sure they'll still need nurses) I say nonsense! humbug! bah! and all sorts of other words too impolite to stoop to.

It's not the proposals to get rid of the "welfare state" per se to which I object. I also don't object to holding people responsible for what they do, nor in finding incentives to make otherwise capable people responsible for their own family's welfare.

It's the helpless, the ones who will never be able to assume that mantle, those who need our assistance to live daily lives of worth and dignity---it's those people who are disposable under any system like what Mr. Murray is being said to have proposed (I admit, I haven't read the book).

A place must be made for those who need help. A society without a way to take care of the truly needful is not my idea of utopia.

But, what do I know? I'm just a nurse employed by the welfare state.

mary

"Extreme Makeover": extremely picky

OK now look: there's a show that purports to "help" people who are in need, by "extremely making over" (is that English?) their house. But they are getting really picky about what constitutes a tragedy and what kind of problem your family is encountering:

(AP) If your family has multiple children with Down Syndrome, a parent with skin cancer or was robbed in a home invasion, ABC's "Extreme Makeover: Home Edition" may be looking to build you a house.

Geez. I guess they only help those whose family story meets the "tragedy of the week" criteria. You'd think they'd evaluate each case on its merits.

Too boring, that.

mary

The Bellevue Literary Review

The Bellevue Literary Review (BLR):

BLR is published by the Department of Medicine at New York University. We invite submissions of previously unpublished works of fiction, nonfiction, and poetry that touch upon relationships to the human body, illness, health and healing. We encourage creative interpretation of these themes.

There is a link above to the Spring 2006 edition with some of the writing available for free on the website, and some submission guidelines. There are some very talented medical writers out here in the blogosphere.

Just a thought.

mary

Normal gestational period=39 weeks?

USA Today reports on a March of Dimes study which shows a decline in the average gestational age of newborns from 40 weeks to 39 weeks. This might lead some to wonder if our species is evolving; but study co-author Nancy Green doesn't think so. More likely we are just intervening early in more cases than ever (C-sections and inductions).

In addition, the percentage of babies born between 34-36 weeks is increasing.

Brave new world?

mary

Those da*#ed illegal aliens using up our tax dollars

Well, put that title in quotation marks in your mind, would you please? I'm paraphrasing multiple conversations I hear all the time.

A recent discussion in the comments section on a blog I've been reading have me thinking again about this subject.

There appears to be a knee-jerk response by a certain segment of the American public (health professionals included) who, when given an example of compassionate care for an undocumented immigrant, state it's not fair:

"It's not fair to reward them for being here illegally".

"Why are they allowed to get medical treatment in the ER?"

"Why don't you all just turn them over to the Immigration folks?"

Without minimizing the problems implicit in large segments of folks entering the US illegally (there are problems, I acknowledge that), trying to control this by controlling access to health care is wrong. Doctors and nurses are ethically required to treat everyone who comes to them, and this includes major as well as minor criminals. We don't do background checks on you. We don't cut off your bloody clothes in the ER and see the knife wound, and then ask for your papers.

And we shouldn't.

In addition, public health measures that would attempt to weed out those who are here without legal status and not treat, are a danger to the rest of us. Tuberculosis treatment, for instance, would be ineffective if we only treated a certain portion of people in a community. An undocumented resident still spreads Tb to the rest of us, if untreated.

And a woman in labor is a woman in labor. Have we actually come to the point where the American public expects a hospital to toss her out on the street to deliver at the nearest 7-11 parking lot, because she can't prove her status among us?

Problems with illegal immigration should be handled at the point of entry (preventative measures, in other words) not at the point of necessity for health care. Health care is health care, and if we ourselves expect to be treated fairly regardless of our own age, race, income, or sexual background, then we make exclusionary rules with extreme care.

mary

Miracle Workers: TV show glosses

On the bioethics.net blog, Caplan and McGee discuss the TV "reality" show Miracle Workers:

In reality, a quarter of us have either no health insurance or lousy coverage. No one has a doctor who isn't using much of the time once spent on patients talking to bureaucrats on the telephone to try and get approval for a prescription or a diagnostic test. A large number of us spend forever in emergency rooms to get basic care. There are many children who get no medical or dental care. The waiting times to see the doctor grow and grow.

I haven't seen the show and don't plan to. But there has been serious talk (and I mean serious to the point of looking up how make referrals to the show) in our office among my fellow care coordinators about getting some of our clients on the show.

I mean, perhaps it's not apparent to many other people, but by God if you're a working parent whose child is covered by your employer's insurance, this is no guarantee at all that you can find the care you need in twenty-first century America. Or afford the copays, either.

One pitiful example: your child needs a wheelchair. Your insurer has a $1000.00 cap on durable medical equipment, no exceptions.

OK, one more: your child needs hearing aids. Your insurer does not cover hearing aids.

We won't discuss the Americans who are working, paying taxes that support the American infrastructure (including Medicaid and TANF, etc), and have no insurance.

We are seriously thinking of asking them to swallow their pride, kiss their privacy goodbye, and call the show.

The state of modern American medicine.

mary

“Killing a defective infant is not morally equivalent to killing a person"

It is frustratingly difficult to explain to "health professionals" the dangers implicit in "quality of life" discussions. Too often, what makes emotional sense to an individual speaker gets translated into policy or standards. Therefore, someone who feels his life would not be worth living if he were to become quadriplegic comes to feel this is a sensible, ordinary, commonplace assumption and therefore true.

Yet the judgment that an individual's quality of life is diminished by a condition (any condition)-which seems so sensible to so many-is in reality based on emotion, not sense. And policies based on emotional arguments about quality of life are dangerous to people who are perceived by others to have a poor (or absent) quality.

Then there is the other side of the mirror, in which quite logical arguments are made about issues like "personhood" and "quality of life factors" and the utilitarian sense of greater good. In this scenario, arguments that are logical are felt to be true. If it's logical, it is true is a very poor basis for making health policy.

Yet this is the realm of argument and theory expounded by the Great Father of Animal Rights and Practical Ethics, Peter Singer. Peter Singer, who has a protected pulpit from which to teach at Princeton University, and who makes logical arguments that killing defective babies is fine because 1) no baby is a person until 28 days of life and therefore no more a person than a fetus and 2) we abort fetuses for this reason; therefore, we should be allowed to kill non-persons for the same reason.

Oh, and by the way, after 28 days some humans never achieve personhood at all, so it is perfectly justifiable to get rid of them as well. He is ultra-careful to not say he advocates killing disabled people. He only advocates that it is perfectly fine to do so, not that we must or should.

A fine point upon which to wash one's hands of other people's actions based on one's preaching.

Now, people who oppose Singer are often told they misquote him, take him out of context, and reformat his arguments. Hogwash. Read Practical Ethics, and make of it what you will. The man who so passionately defends the rights of non-human animals (who is, in actuality, a major founder of the "Animal Rights" movement) considers some humans to be "non-persons" and therefore, disposable at will. He writes about this, he teaches it, and he is paid damn fine money to go around the country advocating it.

Now he is once again on the road, about to be paid lots of money (which he is of course donating to a vegan cause-I suppose on the theory that it is more worthwhile to spare cows than defective babies). I urge anyone practicing in the wide realm of "health" (and I keep putting that in quotes to be inclusive of just about anyone concerned with health care, practice or policy) to read something about Peter Singer. Think not only about his idiosyncratic points of view, but about the dangers of wide acceptance of these theories of personhood.

I've blogged about Singer before, but got little response. So, here's some more information. Please read some of these:

Rehabilitation: Disability Ethics Versus Peter Singer, Gary W. McPherson, LLD, Dick Sobsey, EdD (published in Arch Phys Med Rehabil Vol 84, August 2003)

Unspeakable Conversations, by Harriet McBryde Johnson

A Defense of Genocide, by Cal Montgomery

An Informational Protest, from The Center on Disability Rights and Community Inclusion

Not Dead Yet Fact Sheet: Peter Singer

All of you in health care, whatever your connection, whatever side of the bed you are standing on, are affecting the lives of vulnerable people daily. It's in your practice, it's in your thoughts, and it shows up in your judgments about disability and quality of life. Before you make the automatic assumption that cognitive disability = nonpersonhood, you really must think about where that assumption leads. This is not a non-valid "slippery slope" argument. This is humanity, the very definition of human, and therefore, it is us.

mary

I can't get no transportation

Though I've tried, yes I've tried, and I've tried and I've tried, I can't get none-hey hey hey.

That's what I say.

Keith at Digital Doorway has a post about the trials of people at the mercy of Medicaid transportation.

People with Medicaid in my part of Virginia are, by and large (except for certain rare categories), placed in Managed Care Organizations (MCOs). These MCOs contract for transportation. People with Medicaid are entitled to transportation to and from medical appointments (to oversimplify). The problems are so numerous it is hard to know where to start. Read Keith's post for a good example.

Here's my latest example.

Mom with mild mental retardation living in the community with three children (you think this does not happen? There are lots of people with mild cognitive disability falling through the cracks of this society). Appropriately brought her child to the ER on Sunday for a fever and acute exacerbation of asthma. Given med changes and told to follow up with her pediatrician.

Appropriately calls on Monday morning and gets a doctor's appt for Weds morning.

Calls transportation, and is told "you need to call us five days in advance for a ride".

Calls me, her child's person-of-last-resort (case manager, in other words!). I call transportation and attempt to explain the inability to call five days in advance for an urgent appt.

"We show mom on the bus line (meaning they can tell from her address that she lives on a public transport route) so we cannot accept an appt less than 5 days in advance".

But, I say...

"No buts", they say.

There's always a but. I talk to the supervisor and we finally agree for transportation to pick her up in the morning.

Of course, in the morning, they don't show up. She appropriately calls the doctor's office to say her ride is late. OK, they say, just come when they get there.

Two hours later, they are still not there, despite calls to transportation central.

Meantime, the doctor's office calls her back to say the doctor won't be there after noon anyway.

She cancels.

When her mom gets home from work (the sole family transportation), she goes to the ER.

Why don't I transport her? Unlike Keith's program, I am not allowed to transport anyone (no matter where my heart is). Why didn't she take the bus? She had no voucher, and a bus fare for herself and three kids under ten: out of the question.

And she doesn't know how to get to the doctor's office anyway-what bus to take and how to transfer is beyond her ability.

And she doesn't have a car or a driver's license. Or gas money. Or parking money.

Now, before you get the impression that I think Medicaid owes people a way out of their own poor life choices, you are barking up the wrong tree. I'm just trying to show you the complexities we have built into the system we have devised to "help" people. It is complex to be poor in this country. It is even more complex to be poor and raising kids with multiple disabilities.

The next time an exacerbation of asthma shows up in your ER around 7pm, someone who could have been handled easily at the doctor's office, you might remember this post. It's not always as simple as it seems.

When I was 25-nursing circa 1979

Very busy week for so many reasons, not the least of which is a milestone for my family: my oldest baby is 25 years old. I can hardly believe I have lived long enough to have a child who is a quarter century old (although she cringes when she hears me describe her age in terms of fractional centuries...).

When I was 25, the world was a different place, and I don't mean disco dancing and hair with wings. I was 25 in 1979 (do the math, if you're interested) and here's what it looked like:

~~Navy enlisted wife living and working thousands of miles away from home and family.
~~Half of the nursing staff: ditto above.
~~I worked in a mid-size community hospital on a med-surg floor that had a few telemetry beds.
~~I worked rotating shifts: days, evenings, and nights. Occasionally a night shift would be followed by a "day off" and then a day shift.
~~I became enamored of coffee in any form, due to above. An addiction that has followed me into middle age.
~~I wore a cap, white uniform, white hose, white socks.
~~Nurses were called by their last names. Period. If you were Jane Smith, everyone addressed you as "Smith". This was a Southern cultural norm for hospitals at the time; it was a token of respect. NO DOCTOR EVER addressed me by first name, after I called him (most were him!) by his full title. I called them "Dr. Smith" and they called me "Smith".
~~Evenings and nights, there was no ancillary staff. Nurses did all the 12 lead EKGs and breathing treatments. 12 lead EKGs were done by--gasp!--moving the leads around and then taking a six second strip of each lead placement. One walked around saying to oneself "first intercostal space right sternal border; first intercostal space left sternal border..." and praying no one needed an EKG because:
~~I had 21 patients on evenings, 42 on nights. On evenings, I was the "team leader" on one entire side of a nursing unit, with ten double rooms and one single. I had two LPNS and two nursing assistants for my team. On nights, I had one LPN and one assistant on each team. Me, 2 LPNs, and two assistants for 42 patients.
~~Need it be said no one sat in front of the telemetry monitors? When one got a chance, one picked up the strips that were piling all over the desk and floor from unanswered alarms, hoping not to see some horrible thing. Especially as that would mean pulling out the EKG machine with the little rubber squeezy lead things.
~~I started my own IVs. However, not all patients had IVs as they do now. Probably only ten out of 21. Nights, probably 20 out of 42.
~~Everyone needing a drip of IV meds of any kind (except antibiotics) went to ICU.
~~Post-op cholecystectomies went to ICU overnight.
~~Post-op open heart patients stayed five days in ICU.
~~I was younger than all the doctors.

I worked long enough in that hospital (almost five years, a long time for a Navy family to stay in one place!) to see many changes. Caps became optional a few years later. Staffing ratios were improved by adding RNs to each shift. The telemetry beds were moved to a new "subacute ICU", which I transferred to and which was exciting enough that I eventually moved to ICU. Acuity levels went up. People that used to stay five days post hysterectomy (for instance) stayed one or two.

Now, I am older than most of the doctors.

Things change.

I still like that last-name policy, though.

mary

"I have a family, too!"

This short reflective article by Michael Owen at Ragged Edge Online brought home the power of family to me today. Family is just what so many generations of people with mental retardation missed out on. Many a sleepless night has found me tossing and turning and seeing pictures in my head of people who look a lot like one of the people in my own house, pacing the floor of a state hospital somewhere, with nothing to do and no one to love.

A few years ago there was a wonderful series of articles about an artist in Sacramento, a 76 year old woman named Irene Pinole. The first article was simply a story of her life, a life without family. She had been removed to a state institution at age 11, when some neighbors in her small town objected to her presence among them. Her younger siblings were told Irene had died in the institution, and were never able to find out any more specific information. Amazingly, her surviving family found her after reading the article.

65 years after their total separation, her sister came to see her. "Thank you for coming to see me", Irene said to her sister. No anger. No recriminations. No self-pity. Just love. Just happiness.

I think about these things a lot, when I try to understand this intense fear of Down syndrome that makes so many doctors counsel so many women to have prenatal tests. That makes it such a public health impetus to weed out these lives, the overwhelming majority of which are benign presences among us.

I sent a letter to the Sacramento Bee writer back when the articles appeared, and I saved it because...well, because this particular story about this particular life seems so illustrative to me: of the eugenics movement, of the waste of human potential implicit in institutionalization, of the false fear of people with mental retardation. But also because it illustrates the power of love.

Dear Ms. Hubert:

Your articles about Irene and her reunion with her sister were forwarded to me by a friend, all the way out here in Virginia Beach. Yes, both of us have children with Down syndrome. Their story will touch the heart of any ordinary human being. But it is especially, achingly touching to this mother's heart. In fact, I have been crying for several hours, it has come so close to breaking my heart.

I guess I am crying for many reasons. I am so happy that Irene's sister stepped forward, once she knew where Irene was. I am so thrilled for Irene. I am so thankful she had some loving caregivers over the years, who watched out for her. I am so sad, so overwhelmed with sadness, to see her small world, her few possessions, the little accumulated mementoes of three quarters of a century of American life, all in one small room in a shared house. Oh, I am just sad, for so many lost children, so many families who lost their babies to the state, and most simply, for the babies who lost their families.

I also have a little short person with Down syndrome in my house. Her name is Emily. She is fourteen. She is also four feet six, a very short person, even for someone with 47 chromosomes. Our life is not a fairy tale. She has many challenges, and certainly, her mom has many challenges to meet those Emily brings to our family.

But I look around her room, in her house, which she shares with two sisters and a dad and mom, and about 50 Barbies, and her ever-present CD player with the Kids Bop CDs, and the DVD player downstairs and I think...of Irene. Emily and Irene, and the difference that 75 years in society can bring. And I am not, of course, really talking about the material things; I know you understand that. I am talking about the evidence of ordinary American teenage life.

I don't have a way of getting in touch with Irene's sister or the rest of her family, and actually, would not like to intrude on them. But, if you have a way to be in touch with Olga Johnson, and think she would like to see this letter, I would appreciate your sending it to her. It is not always easy to know what to do or how to act, when newly confronted with a person with mental retardation, and I say this with the utmost respect for my daughter and others. It is the simple truth. But oh! they have so much love to share, they are so brimming with love of the highest nature. Love that expects nothing, and accepts a great deal. Love that surpasses understanding. Joy in simple human companionship that is very hard to find elsewhere.

I hope Olga and Irene can come to have some of that joy, delayed as it may be. Ms. Johnson, from Emily's mom, a handclasp across the miles. Good wishes to you both.
~~~~

P.S.: It appears that Irene is still painting and displaying her work at the Short Center South. Kudos, Irene.

mary

Grand Rounds and Josie King Foundation

Grand Rounds is up at Emergiblog. Kim is at her usual level of great performance---check it out.

There is one link there that you absolutely must check out, whatever your role or roles in the health care system on either side (or sides) of the bed: The Josie King Patient Safety Program.

If you do nothing else in the blogosphere today, read that page.

mary

Disability is not an us-them issue

Last week I had the interesting opportunity to speak on a local radio show at noon. Our PBS affiliate station runs a talk show from noon to one every day, with Fridays being reserved for an "ask the doctor" call in show. A local physician usually interviews one or more guests speaking on a particular health topic, and then they take phone calls from listeners.

Last week, the topic was living with a physical disability in our community. The featured interview was with a Paralympian from Virginia. The other speakers were a young man and a middle aged woman with spinal cord injuries who have various degrees of paralysis, and me-the token "health professional". They were stuck with me because they couldn't get one of our doctors at such short notice.

Several uncomfortable moments ensued, amusing or irritating depending on where the gauge is on your personal radical advocacy meter.

First, the host physician was noticeably uncomfortable discussing disability with disabled people. For example, she made the mistake of asking the paralympian if he played hockey before becoming a wheelchair athlete. Well, he said, he started out with some street hockey that his brother used to play with him and the neighbors, etc. Then she asked about his "accident" and how he got used to playing in a chair. OH, he said. Well, I have spina bifida, I've always used a chair.

Finally, at the end of the show she wanted to know from the two adults in wheelchairs what the "politically correct" term was to call them these days...how should we refer to them?

Which the young man in the wheelchair, representing our local Center for Independent Living, answered in a calm and dignified---if puzzled---manner. Personally, I was glad she didn't ask me. I could not have been dignified.

This show pointed out to me, once again, that we are still talking about "us" and "them". Now, this is helpful (or, it seems to be helpful from the outside looking in-I can't speak for the disability community) for disabled activists who want to claim being part of a distinctive subculture. For people who have been marginalized by mainstream society, this is surely the way to claim a distinctive voice based on unique viewpoints and common experience of being defined by their disability. Plus, the chance to create artistic and literary expressions from this viewpoint, and be proud of their unique perspective.

But it is not very helpful from the point of view of building accessible communities. To continue to talk as though there should be two different kinds of people-abled and disabled-negates the continuum that defines human function. We are all abled or disabled; we differ only in degree and kind.

Disability is simply a part of life. When we build communities in which everyone can get around, in which getting on a bus with a wheelchair is no big deal, in which all stores have adequate access and doorways which admit power chairs, then we will have communities which will be ready for us when we have to have access.

We don't grant people favors by making things accessible. We are not the beneficent almsgivers handing out tokens of "politically correct" curb cuts and Handi-rides. That is just illusion. There is nothing separating "us" and "them" but one split second in a car, or one tiny germ, one abnormal connective tissue gene or one cancer cell.

It is way past time to start seeing that creating us-them societies harms everyone.

mary

"Anybody know anything about this kid?"

Children With Multiple Disabilities in the ER

Children with special health care needs (CSHCN) are at risk when they visit an emergency room. Yes, you read that sentence correctly: they are at risk when they visit an ER. This is particularly true for children with low-incidence conditions, but it's also the case for those with complicated disabilities or multiple conditions.

The AAP had an interesting little news report in 1999, when they launched the effort to encourage pediatricians to help families develop emergency care plans for CSHCN. There are two illustrative cases which show how the emergency logarithms and flowcharts for triage can interfere with children whose care requires out-of-the-ordinary treatment.

However, even those children who could benefit from ordinary emergency treatments are at risk from clinicians who don't understand the intricate complexities of their little individualized extra-ordinary lives. For example:

~~Children who are participating in clinical trials of medications or formulas and who come to the ER without their parent (for instance, when both have been in a car accident and the child comes to our pediatric facility).

~~Children awaiting congenital heart repairs, or who have had partial repairs (stage one but not subsequent stages, for instance).

~~Children with rare metabolic disorders.

~~Children with common incidence disabilities (such as cerebral palsy or Down syndrome) but who have multiple complications, many doctors, much equipment, frequent illnesses.

The AAP and the ACEP (American College of Emergency Physicians) recommend that all parents have emergency plans written down for just such events. Because it is not easy-for ER staff or parent-to arrive in a crowded and busy ER with a sick and unusual child with a long complicated history and multiple specialists who each treat a portion of the body or a particular symptom.

What I often see happen is the ER staff discounts mom's worries because she can't make a diagnosis of what is wrong. Yes, you also did read that sentence correctly! Staff somehow expect not only that mom can tell them exactly what treatments and medications the child is receiving, what body systems are affected, the entire medical and surgical history of the child, and which specialists are currently seeing him, but also "what's wrong".

I realize there are exceptions, and parents don't always know an emergency from an acute illness or possible simple complication. However, most parents become acute observers of their complicated children and know when something "just isn't right". When they tell you their kid with a G-tube "sometimes throws up, but not like this, not this much", or that their child with partial heart repair "sometimes looks a little blue but I've never seen his mouth this color before"-it would be a good idea to listen.

Meantime, I try to get all my families to fill out emergency cards at the least, with meds and doctor names, etc. Lots of my parents have care notebooks, with histories, surgery dates, medications, doctor phone numbers, etc. This helps-if they bring it!

However, more than one of my clients' moms have had ER staff raise their eyebrows when she pulls out the care notebook: instead of a prepared mom she becomes an "overinvolved parent", a control freak, and someone who doesn't know her place.

Well, I suggest ER staff understand that these parents are caring for children who, if they were in-patient, would require professional nursing services. They have tube feeds, IV ports, trachs, oxygen, suctioning, bladder cathing, etc. The mom with the care notebook is your ally, not a control freak. Not an "overinvolved parent". She has had to learn nursing by on the job training, and so lacks any fundamental theory of illness. She only has one patient, but believe me, she knows that particular patient pretty well.

It would be a good idea for ERs to stock the emergency plans from AAP/ACEP, or something similar, and hand out to parents as they are leaving the ER if they have not come in with one. Make your life easier the next time they visit. Because, if he lives in your community, that CSHCN will be visiting you again!

mary