The Chatelaine's Keys

Sharon November 27th, 2011

It is a dark time of year now, and it makes me drowsy.

Americans carry enormous sleep debt – if you put the average American in an extended sleep study, exposed to natural light and allowed to sleep as much as their bodies demand, they will sleep 14 hours a day for the better part of a month, until they catch up and naturally begin to average out around 8 hours. We spend a lot of our lives ignoring our natural sleep patterns, and at some real cost to ourselves. 10,000 car accidents a year occur as a result of sleep deprivation. Sleep deprivation is associated with depression, anxiety and the development of hypoglycemia and even diabetes. Because of sleep deprivation, we consume enormous quantities of caffeine, with negative effects on the gestation of our children, our blood pressure and our ability to sleep…which causes us to spend almost a billion dollars each year on medical sleep aids which in turn….

While there certainly are intractable and medical sleep issues out there (as a parent of an autistic son with sleep issues, that’s something important to remember), the evidence suggests that the solution to most sleep related medical problems for MOST people  is simple. Turn off the artificial lights as much as possible. Go to bed at the same time each night. Get as much rest as you really need.  Move your body more during the day.

Now for some of us, this isn’t realistic. There are people who have to work nights. New parents are probably never going to get as much sleep as they’d like. There are some people whose bodies really do seem to be implacably on a late night cycle. But most of us aren’t – sleep studies show that even “night owls” when exposed to enough natural light and darkness tend to move their cycles back towards everyone else’s.

Now if we were to obey that advice, what would the environmental consequences be? What would they be, for example, if pretty much everyone in the US turned off their lights at 10 pm and actually went to sleep for 8 or 9 hours?  If instead of pushing harder, we went to bed earlier when days get short and nights are long?   If we all turned down our heat, flicked off the power strips and otherwise simply did what their bodies were telling them. What if we unplugged the coffee pot?”

Trust me, I am not innocent here at all – I have a tea habit of my own, and the tendency to burn the candle at both ends.  One thing, however, that years of chronic child-related sleep deprivation have taught me, however, is that few things are worth more to me than some sleep, and that I’m happier if I go to bed rather than playing late with the computer or trying to make myself as productive at night as I am in the day.

These are small things, of course, but they are significant. And think about what kind of *people* we’d be if we were getting enough rest. We’d be less grumpy with each other, maybe a little better at making community. We’d be better able to face the physical burdens of a human powered economy. We’d be less prone to illness, saving ourselves a great deal of money, discomfort and lost wages. We’d be better able to face change – tired, grumpy, overwhelmed people never look on difference as a good idea. Would it change the world? Probably not. Would it save energy and improve our lives in a host of ways? It just might.

When the nights get long, my first impulse is to put on the lights and push hard – admitting that the change of seasons changes my body and my needs can be difficult.  The rewards, however, of sleep are great, and I’ve learned over the years to appreciate the long nights and the time to rest.

Naps are good too, but that’s another post.

Sharon

• adapting in place , health
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admin March 23rd, 2011

Not-unexpected but useful news item that got buried behind Tokyo’s contaminated water story – apparently Americans aren’t spending 8K a year on health care costs, they are actually spending 10K a year on health care costs.  Is this the time for one of those choruses of “We’re number one!”

These “hidden” costs of health care — like taking time off to care for elderly parents — add up to $363 billion, according to a report from the Deloitte Center for Health Solutions, a research group.

hat amounts to $1,355 per consumer, on top of the $8,000 the government says people spend on doctor fees and hospital care.

“We’re surprised that this number came in so high. It’s significant,” said Paul Keckley, executive director with the group.

The out-of-pocket costs that the government tallies usually include only insurance-related costs like premiums, deductibles, and co-payments.

Keckley said the study is the first to estimate how much consumers dish out on health care related goods and services not covered by private or government insurance.

These include: ambulance services, alternative medicines, nutritional products and vitamins, weight-loss centers and supervisory care of elderly family members.

“These costs can add up to billions of dollars, even eclipsing housing as a household expense,” said Keckley.

The study found that more than half of those costs were the cost of caregiving in lost wages.  This is a number we can only expect to see rise radically.  Many states have already cut aide and home health care support, assisted living kicks you out as soon as your income runs out, disability housing and services for the disabled are among the first convenient targets when budgets get tight, and the state funded nursing homes are both closing and becoming increasingly dire.  Add to that an aging population, and the outcomes are predictable.  The only alternative is for people to do caregiving at home – and at considerable cost in both wages and personal terms.  For those unlucky enough to have no one to take care of them, the outcomes are worse.

This is something I know something about – I worked for many years in elder care and hospices, then cared for Eric’s grandparents in our home, and eventually I will be my oldest son’s caregiver, since he is unlikely to ever live independently.  We are also guardians for our disabled niece whose mother is a generation older than I and who will also probably never live independently.  Giving care is something I expect to be doing for a long time.  I’m very comfortable with that part of my life, but I don’t claim it will be easy or that the costs will be easy to bear.

The hard reality is that a lot of people will have to come out of the workforce in order to do the work of caring for children, the disabled and the elderly.  The good/bad news is that a lot of people are coming out of the workforce, of course, but their obligation is to look for work full time – which pretty much precludes taking care of Grandma, your brother who is a war amputee or any children who need it.

Apparently many economists were surprised by the high cost of caregiving, of transporting the ill too and fro, of all the attempts to find alternatives and to soften side effects that go will illness and disability, aging and ordinary childhood health costs.  Anyone who lives them is not.  The reason these are surprising to some people is that they are “housewifized” out of existance – our society doesn’t recognize the value of caregiving except when it is professionalized and industrialized.  It erases domestic and family support, implies they are valueless and best undertaken in professional settings.  Then, when the money isn’t there or the professional settings are unhealthy, we pretend that this is not “real” work.

The shifting of nearly everyone into the industrial, formal economy resulted in the radical impoverishing of the informal economy – an impoverishment that must be reversed if outcomes are to be better than worst.

Sharon

• aging , economy , health
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Sharon September 25th, 2009

I spent the better part of two decades living in Massachusetts, so when I saw several people linking to a Fox News report (this should be an alarm button right there) that Massachusetts had instituted forcible vaccinations, would be kidnapping people and instituting a “medical police state”, etc… I figured I ought to at least go read the language of the new law, senate bill 2028.  Now remember, this is not law, it has passed the state senate, but not the house.

What I found is troubling, but perhaps not quite what some of its critics are saying.  What’s most troubling about it is the idea that these policies could be enacted for a low-severity flu virus like the present form of H1N1.  I think that this is extremely disturbing – the level of hype about pandemic influenza is so high that it is extremely worrisome to imagine that the Massachusetts governor could apply these to a low-severity virus.   This bill *absolutely* must include clearer language about when a pandemic emergency can be declared, and about the number of medical agencies that must achieve consensus that there is just cause for such an emergency.  The absence of sufficient language in that regard should be enough to kill the bill.

That said, however, most of the most controversial requirements are medically appropriate for preventing the spread of disease, assuming that the disease was a high mortality, highly contagious disease such as Ebola, Plague, a very high mortality flu, etc….  It should not be applied to any medical emergency that doesn’t meet both the criteria of high mortality (in excess of 5%), and *also* high degrees of transmissability – ie, airborn or easily contact-spread virii only.  What the bill needs is a set of restrictive premises under which it could be enacted, and a lot more appropriate medical language.  There are also some real concerns, particular permission for law enforcement officials to deem appropriate arrest without a warrant, to enter buildings without a warrant, and the lack of parameters about what constitutes “decontamination of persons”.  Again, there’s a lot not to like here, and I think the bill should be killed and sent back for rewriting.

But I’d like for a second to talk about the medical realities of a real, high mortality pandemic – consider, for example, the outbreak of pneumonic plague that occurred in Ziketan in Northwest China over the summer.  Pneumonic plague is airborn, highly contagious, is often fatal as quickly as 24 hours after being contracted and has a mortality rate of nearly 100% without aggressive early treatment within 24 hours of symptoms, and mortality rates above 20% with aggressive antibiotic treatment.  7 days of heavy antibiotic treatment in advance will almost always prevent the spread of the disease.

Now we are all very fortunate that during the last outbreak of pneumonic plague, it occurred in very isolated northern china, and that no one got on a plane that was infected.  The total deaths were limited to three, only 12 people actually contracted the disease.  But this is the case *because* China enacted policies that are pretty much the ones described in the Massachusetts laws – they isolated the entire town, quarantined people in their houses, with strong penalties for leaving them, they treated anyone who might have been exposed with antibiotics, whether they wanted them or not, they commandeered facilities and enacted martial law.

Had they not done so, had a person carrying pneumonic plague, say hopped a flight to London and survived 48 hours touring that city, while his flightmates went on to New York, Paris and Johannesburg, we might have had a world-wide outbreak of pneumonic plague.  In that situation, any rational government would do what China did – quarantine, close the cities, ground the planes, mandate antibiotic treatment or quarantine for everyone exposed – period.  And quite honestly, it would be insane to do otherwise – the rights of other people stop well short of killing thousands of other people.

Everyone raise your hands who would be happy with a purely voluntary treatement and quarantine policy in this case?  Every parent who has ever known any other parent to send a sick kid to school, raise your hands?  Every adult who has ever had a co-worker come sick to work, even when they shouldn’t have, raise your hands.  Everyone who has ever met an illegal immigrant who would be unlikely to come forward to for any program involving “authorities” raise your hand.  Seriously, I think while it is deeply important not to overstate the risks of H1N1 or to allow them to constrain our freedoms, it is also important to recognize that in a world where people travel the globe, it is possible to imagine a situation in which the transmission of a major illness can only be constrained with the restriction of personal freedoms. 

I generally support the right of parents and adults to choose to be vaccinated or not – and much of the controversy focuses on the provision for vaccines - Fox News talks about forcible vaccinations. In fact, the bill provides for forcible vaccinations *or* quarantine – that is, if you are exposed to the disease or living in an area where a pandemic is rampant, if you decline vaccination, you must be quarantined.  I have no ethical problem with this, again, provided that reasonable provisions are made to make sure that pandemic response is enacted only in the case of a high mortality outbreak.  I think that given the limited testing of the H1N1 vaccine, it is perfectly reasonable, in a low mortality outbreak like the present one for everyone to have the right of refusal. 

But that is not the case were the H1N1 documentably to mutate into a high mortality disease – I agree that even in those cases, no one should be forced to take the vaccine.  But if you aren’t going to take it, *in a situation where there is a high mortality virus to which you could expose others*  you do have an obligation not to infect others – ie, to accept quarantine.  This cannot cause undue hardship because the Massachusetts law explicitly provides for unemployment payments for anyone who either is in quarantine themselves or who is required to tend a quarantined child, and prohibits with legal penalties the firing of anyone because they have been put into quarantine.  IMHO, this is about as just an arrangement as can possibly be made – my family might well refuse a vaccine I believed to be dangerous or ineffective, but I don’t believe that the quarantine obligation is then unfairly onerous – again, assuming that the regulations are enacted only in situations of great exigency.

The reality is this – there are occasions in which personal freedoms are subsumed in a crisis.  I understand that all Americans have excellent reason to fear, in the years since 9/11, the use of a crisis as excuse to limit our freedoms – this is legitimate, and it is right. But it is also the case that there are times when all of us using our own personal judgement to make decisions are unacceptable – and we know this.  It is a difficult thing to balance these, but I think it is important for Massachusetts residents to oppose senate bill 2028 *on the correct grounds* – not because the state never has the right to subsume individual rights the rights of the public not to die, but because they only rarely, and in extreme exigency do.

I think that Senate Bill 2028 is a failed bill, that it should not pass the House in Massachusetts and it needs to be rewritten and amended.  That said, however, it is also necessary at times for us to be able to constrain the spread of disease – because the odds are excellent that sooner or later, some of us will need someone to articulate the rights of other people not to be exposed.

Sharon

• health
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Sharon August 24th, 2009

Orlov does it again:

 “I would like to sell you some hunger insurance. Are you insured against hunger? Perhaps you should be! Without this coverage, you may find it impossible to continue to afford feeding yourself and your family. With this coverage, not only will you be assured of continuing to get at least some food, but so will I. In fact, thanks to this plan, I will get to eat very, very well indeed.

The company is in a position to demand lower prices for food from the food providers, and can even pass some of these savings on to you. (But the fine folks in the hunger insurance company do have to eat too, you know.) Of course, the food providers try to make up the difference by charging those without hunger insurance much higher prices, but how can anyone blame them? That’s just market economics. There may also be some food-related benefits, such as lower rental rates on bowls, spoons, napkins and feeding tubes (check the details of your plan).”

Read the whole thing.  You’ll laugh, but nervously.

• health , orlov
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Sharon August 10th, 2009

We spent a rare weekend away from the farm, visiting family near Boston, and just relaxing.  It was lovely.  Meanwhile, I was only half paying attention to the news, but couldn’t help noticing the millions of people all over Europe and throughout Canada who were rioting, demanding an American-style health care system to free them from the deep tragedy of theirs.  Oh, wait, maybe I wasn’t .

 What I was watching was the inanity of the protests against “socialized” medicine and the crazy objections to the idea that poor people shouldn’t die sooner than rich ones.  The emphasis is mostly on a tiny number of examples, many of this false or based on incorrect assumptions, of people who are in some way unhappy with their European or Canadian health care systems.  Now I’m pretty sure if we worked at it, we could find an equal or perhaps even greater (gee, how unlikely is that) number of Americans displeased by their health care system, but you’d never know that.

I was thinking about this as I sat visiting with my aunt, who had recently returned from a summer trip to Ireland, where she had sojurned with her 88 year old mother and 9 year old daughter.  Now her daughter “Lucy” has epilepsy and a number of other disabilities, but hadn’t had a seizure in several years.  While they were travelling in rural Ireland, however, Lucy had a sudden, severe seizure, and my aunt got to experience British medicine first hand.

My aunt’s commentary on this was fairly simple.  She noted that in America, when you enter an emergency room, you are asked three things – your name, the nature of the complaint, and how will you be paying for this.  When she and her daughter arrived by ambulance at the emergency room in Ireland, she was asked, again, three things.  Her name, the nature of the complaint, and would she like a cup of tea?

The experienced with National Health, she observed, was hugely different from that of American hospitals after Lucy’s seizure – instead of doing dozens of tests on Lucy, they did one, the relevant one.  As Lucy was showing signs of recovery that evening, they held her for observation and released her, rather than insisting she remain in hospital for several extra days, just in case, as has happened in the US.  She was seen rapidly, the emergency room was calm and the doctors responsive, and despite the fact that they were not British citizens, there was no charge.  Like everyone I know who has ever experienced any kind of national health system, my aunt’s reaction was that if we did half as well, it would be a huge improvement.  My own observations on that front are similar.

And this, of course, is the clincher – I’ve never, ever, ever heard anyone, from any country with any kind of national health service suggest that they would rather live under the US system.  Not one. 

Contrast Lucy and my aunt’s experience in an emergency room with my last experience in an ER.  My husband’s grandmother, a few months after the death of her husband, took a wrong turn in the dark while visiting her cousin for Passover, and fell down a flight of stairs.  She broke her neck, her leg and her collarbone.  When one says she “broke her neck” it sounds as though she must have died instantly, but that’s not the case.

What happened is this – her elderly cousin, sole caregiver for her husband who had had a stroke, rode to the hospital with her, after calling us to come.  We were visiting my MIL across NY City, and I immediately got up in the night, dressed and took a cab to Queens from Manhattan.  By the time I arrived at the hospital, Inge’s cousin had returned to her husband, because he could not be safely left alone.  When I arrived, she’d been at the hospital for an hour, without a single person examining her. She was still strapped to the stretcher, in an ice cold room without a single blanket (she was wearing only a light nightgown, which was up above her waste, where she was completely exposed), and was weeping with pain and cold.  When I finally managed to orient her, and asked a nurse to attend to the fact that she was in acute pain, the nurse said “Oh, yes, she had a fall, I’m sure she’s just sore.”  This was in reference to an 80 year old woman who had fallen down a long flight of stairs, and who had a visible broken bone, as no one can keep their leg at that angle.

I finally got her warm (she was in shock, very easily recognizable, dangerous and totally ignored) and pain medication, and she became lucid.  A doctor, coming to examine her (three hours after arriving) said that even though the CT scan machine was occupied and even though she was having head and neck pain, he thought she probably didn’t have any serious neck injury, and he sat her upright for her examination, even though that’s just about the first thing anyone learns when they do any medical examination – never jostle a head or neck injury about.   He told her she’d just need light surgery for her broken leg (missed the collarbone entirely, along with the neck injury) and that she could be released to rehab the next day.  I was the one who insisted that she have her neck scanned, and, of course, it turned out that she had a severe break.

We spent 12 hours in the emergency room with beds literally so closely crammed together that there was no room for a chair, and chairs were forbidden.  I was 3 months pregnant with Asher, and I stood on my feet for 11 consecutive hours, until Eric’s father arrived to take over attending her.  She was finally admitted, after the neck injury and collarbone were detected. 

Eric’s grandmother was slightly deaf, and when forced to lie flat on her back, often couldn’t understand what was being said to her.  When she realized her neck was broken and she would require massive surgery to repair it, she was very concerned that her wishes that no heroic measures be taken be respected if it seemed likely she would die.  My husband and I were the bearers of her power of attorney, and asked that it be invoked, and she agreed – we asked the hospital employees to make absolutely sure they were familiar with her documentation (which we had on hand, sent over by her attorney), and that before any major medical procedure occurred, we be consulted.  They agreed.  Then, during the early hours of the morning, while my husband and I were asleep (and yes, they knew our number) during some action that a nurse took, her neck was jarred further and my husband’s grandmother went into spinal shock.  Without our consent she was put on a ventilator and kept alive against her intentions, expressed will, every request, our request and all documentation.

Arriving at the hospital the next morning, my husband and I and her daughter spent the day trying to get the ventilator removed so that Inge could die in peace as she had always wished.  The doctor who had put her on the ventilator against her consent had “ethical issues” with letting her do as she had chosen, and as we had asked, and was in surgery and would not deal with her.  She was in a great deal of pain, and very clearly able to express her wish to let go.  Despite the fact that surgery to repair her neck injury was admittedly now impossible, despite the fact that even before she was an 80 year old woman in mixed health and there was an excellent chance she would not have survived the surgery, despite the fact that the hospital had demonstrably contributed to her condition by handling her roughly and moving her neck without support before they were certain of the extent of her injuries, despite the fact that she lacked the will and desire to live as a quadrapelegic, they felt they knew best.  I’ve rarely felt so much despair and anger at anyone as I did dealing with the hospital in this case.  I felt we’d failed her – Eric and I had promised her that this would not be the kind of death she would have.  I remember weeping hysterically in the hallway, after the fourth or fifth doctor came along to cover the legal ass of the hospital and showed absolutely no concern for Eric’s grandmother or her wishes.

Finally, after a very long, miserable day, Inge was removed from the ventilator on which she should not have been placed, and allowed to die.  She had incurred tens of thousands of dollars in medical costs, received terrible care, and was kept waiting even for death, by the estimable American medical system so many people are fighting so foolishly to keep. 

What’s notable about this story isn’t the story itself, it is that I could actually tell two or three other ones about the American medical system, but won’t, for lack of space.  I could, for example, talk about why my son, at 6 weeks old, was admitted to a hospital to be treated for a disease he did not have, and for which the only evidence was a screw up by two separate lab technicians.  In the meantime, he was tortured – he had 6 spinal taps in a matter of a few days, and we consented, because every time we questioned the doctors, we were told he would die if we took him out of the hospital, and it would be our fault.  And no, I do not exaggerate here. 

I could tell other stories, belonging to friends and family – but all of them are mostly the same – they talk about a health care system where doctors, nurses and administrators have been forced to be so fearful of a lawsuit that they run up costs beyond reason, but where competence and kindness cannot be rewarded.  I could tell more stories of long waits to see specialists (we’re always threatened with waiting – but I’ve never waiting longer in any country than the US to see people), of bankruptcies, and early deaths, and more commonly, unnecessary suffering. I could tell you terrible stories that work in every direction – of doctors driven out of practice by escalating insurance costs and huge amounts of paperwork, of patients deprived of basic medical care, of desperation.

And I can’t tell you those stories in other countries, not because there are no horror stories, not because no one in any other country has ever had a bad experience with medicine, or wanted something they could not have – but because en masse, there is no one who would choose the American system over any other rational system.  If you can name a large population from a developed country with national health care clamoring for an American style system, please, enlighten me.  Instead, what I hear overwhelmingly from across the world (and have heard for decades) is Thank G-d we don’t have American health care.

The big question, of course, is whether we can afford it.  Well, if you’ve been watching the news about Fannie Mae and Freddie Mac, you will see that they are slowly but definitely sinking into the sea, and about to create an economic crisis far greater than anything Bear Stearns or Lehmans ever could.  We will certainly spend money we can’t afford on that.  There will almost certainly be more stimulus we can’t afford.  There will certainly be more bank subsidies we can’t afford.  We are spending money in Afghanistan and Iraq we can’t afford, at huge cost to human lives and to the nation.  Our whole world is things we can’t afford.

The difference is this – a reasonable health care system actually gets us something. It will save us billions in wasted ass-covering.  It will give people access to a basic need – everyone gets sick or hurt eventually.  It will create a society of greater equity and lower suffering.  Of all the things we cannot afford, it is the only one proposed that’s really worth having.

Sharon

• health , politics
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