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Accepting The Death Of My Mother

20010921-babbaFor years my friends and patients have told me how surprisingly shocking the death of an elderly parent can be.  We know it’s inevitable yet the finality is jarring.  But knowing and KNOWING are two different things.  So her son the doctor reacted just like so many others when my mother died unexpectedly last March at 86 after falling and striking her head.  I found it hard to get my arms around the idea that my mother was no longer alive.

I received an outpouring of beautiful condolence letters and contributions but have only written a handful of thank you notes.  My undoubtedly over-simplistic armchair psychiatrist explanation is that if I don’t write the notes then maybe she didn’t die.  And I’m not alone in my behavior.  My 90-year-old father, married to my mother for over 66 years, asked me a few months after her death if it was ok that he was pretending she was still alive.  “Absolutely,” I replied.  “That’s why God invented denial.”

My mother lived totally in the moment.  She’d start to peel an orange and would say “at this moment this orange hasn’t seen the light of day.”  Every morning she would look out the window at our breakfast table and say, “Good morning, dogwood tree.”  More often than not, whatever she was experiencing was “the best ever.”  The best ever sunset was the one she was watching.  The best ever salad was the one she ordered at our last lunch alone together a few weeks before she died.  Her best ever meal was the one she had just finished.  She did not want to waste a single second, as was reflected in a hilarious essay she submitted to the New York Times upon turning 75.  It was rejected; so here is the world premiere {link to NYT submission below}.

My wife had the idea to plant a dogwood tree on the top of the beautiful Vermont hill where we had sprinkled my mother’s ashes.  Yesterday my family gathered under cloudy skies for the ceremony.  One of my two sons sang a beautiful song he had composed using the lyrics of a poem called “Growing” that my mom had written when my three sisters and I were little.


Goodnight sweet baby and goodbye
I’ll see you as you are no more.
For dusk has settled in the sky
And you have wondrous dreams in store.
As you sleep, a magic hand will touch you
And you’ll grow more wise.
Tomorrow morning you’ll awaken
New and different in my eyes.

This morning my father admitted that he still finds it hard to accept she’s gone and sometimes imagines that “she’s just out shopping.”  But we’re both starting to accept that we’ll see her as she was no more.  This afternoon I’m going to start writing thank you notes in earnest.  Well, maybe tomorrow.


Dear Editor:

I just celebrated my 75th birthday, and do you know what?  I’m better than ever!  Well, I guess you could say I’m stronger than ever.  No, not in my muscles, which can be developed and maintained during regular workouts in the gym, but in my mind, which gets a daily ongoing on site workout.  I now have the strength of my convictions, something I never had when I was young because in those days I always aimed to please, so that everyone would like me.  I have now become much more assertive, more determined, more stubborn, and more aware of the passage of time, and as I calculate how much of it I have left, I have made a firm decision not to waste one moment of it.

With that thought in mind, here are some resolutions I’ve made to myself for the New Year:

1. I will not open unsolicited advertisements in the mail.  This includes 10 million dollar lotteries and free trips to the Caribbean.  Into the garbage they go!

2. I will not make dinner dates with boring people.  This includes people who didn’t used to be boring but are now.

3.  I will not put off doing things that I want to do.

4.  I will not attend meetings out of a feeling of obligation.

5.  I will not play singles rather than doubles in tennis or play an extra hour because I’m afraid to say no.

6.  I will not ride when I can walk or walk when I can ride, depending on how I feel at the time.

7.  I will not take part in long phone conversations with talkative people who are boring.

8.  I will not dress up to go out if I feel like wearing a shirt, sneakers and jeans.

9.  I will not shop ’til I drop.  I never did and I certainly won’t start now.

10.  I will not agree with someone unless I really do.  I won’t be afraid to express my opinion.

11.  I will hang up instantly on phone solicitors with no apology whatsoever.

12.  I will remove the tag from each and every mattress that I own with absolutely no fear of penalty of the law, and when I make the bed I won’t always do hospital corners.  Sorry, Mom!

13.  I won’t be afraid to break a date if something better comes along.

14.  I plan to make a lot of money selling something on Internet.  Don’t know what yet.

15. I will not be intimidated by a surly maitre d’ or waiter. I won’t be afraid to send something back if it’s not to my liking, and if the rolls aren’t hot, back they’ll go.

16.  I’ll squeeze the toothpaste from the top of the tube–so there!

17. I’ll watch every Seinfeld rerun, all Frasier episodes and all Woody Allen movies.

18. I will wear white before Memorial Day and after Labor Day if I want to.

19.  I will always remember that health takes priority over everything, and I will guard it carefully.

20.  I will keep smelling the roses and seeing, tasting, touching and hearing the world about me for a long, long time.

Happy New Year!!

Elsa LaPook

Weird Medical Problem Of The Week: Infected Umbilicus

Occasionally I post something that scores high on my weird sh!tometer (here, here and here). It seems this is such an occasion.

I thought of this incident recently when I was privy to some doctors complaining about stupid referrals. This was the only one I could think of. In reality it was more a moronic patient than a moronic referral.

As usual it was late at night. The casualty officer said he thought the patient had an enterocutaneous fistula (connection between bowel and skin). I asked why someone with something like that would wait for the middle of the night to turn up in casualties when the condition was almost always chronic. He gave a nervous chuckle and agreed. When I started asking about possible disease processes which could give rise to this condition (which pretty much can’t just happen spontaneously) he had no answers. In his voice I could almost hear him saying:

“Come on. I’m tired. It is a stupid thing to come into casualties for at this hour but here she is. Just come down and see her so it is no longer my problem.” I answered before he was forced to actually say these words.

“Ok, I’m on my way.”

The patient was an old Indian lady fully-clad in her robe-like traditional garb. I asked her what the problem was. She was quite a bit less than forthcoming. I asked her to show me the problem if she couldn’t describe it. She lifted her robe. I was not prepared.

She presented a disfigured torso and abdomen. It seems when she was younger she had been severely burned by hot water. Those areas that had been burned were devoid of fat and had skin attached directly to the underlying muscle. Between being young and the present she had become obese. Actually that is only partly accurate. Only the unburned areas had become obese. She had areas of supreme obesity interspersed by a network of amazingly slim. On one of the fat areas, towards her flank was an opening which was oozing pus. The smell was unearthly. I may have gagged a bit. But something was missing.

“Where is your umbilicus?” I asked. She looked sheepishly away. She was determined to not be forthcoming. A more direct approach might work, I decided. I pointed to the suppurating hole almost on her flank and asked:

“Is this your umbilicus?” She nodded. The burn wounds interspersed with severe obesity had dragged her umbilicus to her flank leaving behind a long oozing tunnel. I was annoyed. She knew what the problem was from the beginning. She also knew that it wasn’t something to come into casualties for in the middle of the night. She had been taking us all for a ride. But what could I do? She was there and I had to do something. Something, I decided, would involve double gloving.

I inserted my finger into the oozing hole. As expected, now that I knew what it was, It tracked towards the midline where the umbilicus had been many years before. At its base I felt a tennis ball sized mass of old debris. This time I did gag. This mass I scooped out bit by bit until the umbilicus was something it hadn’t been for years…clean. Annoyance fell away to disgust. I almost couldn’t speak because of my gag response, but I forced myself.

Fortunately all I really had to say was:

“Have you heard of soap?”

*This blog post was originally published at other things amanzi*

Counter Point: American Healthcare Is Not The Best In The World

Let’s get honest, OK? America does not have the best health care in the world. Europeans and Canadians are not flocking to our borders to get to our health care. It is time we realize that we can learn from our neighbors and we don’t have to claim we are the “best” at everything. It makes us look really stupid in the eyes of the world.

Here are some facts. We do spend the most money on health care in the world. We do spend the highest percentage of Gross National Product (GDP) on health care and we do spend more dollars per capita than any other country on Earth.

The claim that the United States has the best health care in the world has been proven false by every broad metric used. The World Health Organization and the nonpartisan Commonwealth Fund rankings rate the U.S. last of the Western industrialized countries. The WHO ranks us 37th of all measured countries.

The Commonwealth Fund says, “Among the six nations studied—Australia, Canada, Germany, New Zealand, the United Kingdom, and the United States—the U.S. ranks last, as it did in the 2006 and 2004. Most troubling, the U.S. fails to achieve better health outcomes than the other countries, and as shown in the earlier editions, the U.S. is last on dimensions of access, patient safety, efficiency, and equity. The 2007 edition includes data from the six countries and incorporates patients’ and physicians’ survey results on care experiences and ratings on various dimensions of care.”

The U.S. also lags in information technology. (We have been awaiting a robust electronic medical record for 10 years) and in coordination of care and in measured quality outcomes.

One of the ways we improve in health care is when we face the brutal truth. How can you make improvements if you don’t know where you are starting from? If you truly believe you are the best in the world…there would be no need for health care reform.

Perhaps that is why these myths and lies are being propagated.

*This blog post was originally published at EverythingHealth*

Healthcare Reform Q&A With Mother Jones Of Nurse Ratched’s Place

nurse-ratched-smallest-webI hate it when I can’t get into conversations that are happening on my own blog. My job at UGH (undisclosed government hospital) has a way of getting in the way of my real life. Jeanne T. has asked a lot of valid questions about healthcare reform. She also asked me to answer some of her questions. Here we go:

Have you read HR: 3200?

I have not read all of H.R. 3200 – America’s Affordable Health Choices Act of 2009. Reading War and Peace is more entertaining than reading a congressional bill, so I only got through about 150 pages of text before my brain cells started imploding. However, I did learn a few things about the proposed legislation. No one is going to kill your grandma or reduce Medicare benefits. This new legislation will save money by cutting billions of dollars in overpayments to insurance companies and eliminating waste, fraud, and abuse. Maybe that’s why the insurance industry is spending billions of dollars to defeat this bill.

Question: Do you currently have money taken out of your paycheck
for Social Security?
 Do you believe that you will receive Social Security assistance when you pass the age of 65, 70?
 What is the reason that you and I will not receive Social Security checks?

Answer: Do I have money taken out of my check for Social Security? Is the Pope Catholic? The good people at UGH take money out of my check every two weeks for Social Security, and I know that I’ll never see that money again.

I’m a nurse for life, which means I’m not going to retire. In other words, I’m going to die with my Nurse Mates on. Unfortunately, I believe that my peers are going to receive meager monthly social security checks after they retire. I know where you are heading with this question. “If the government can’t run the Social Security Administration, what makes you think that they can run a public health care system?” It’s all President Franklin Roosevelt’s fault. The social security system is the ultimate Ponzi scheme, and Roosevelt set it up as a safety net to help out old folks just before they died. The average life expectancy back when Social Security was set up was around 60 years old. President Roosevelt got messed up because he thought he we would always have more money coming in than going out. He didn’t know that our life expectancy was going to go up, and he had no idea that future administrations were going to tack on more entitlement programs. Now Roosevelt’s Ponzi scheme is out of control, not so much because of government mismanagement, but because we aren’t dying off quick enough to make the system work. Hey, wait a minute. Maybe we need to rethink those death panels. Just sayin’.

Question: Can the US government run a public health insurance agency?

Answer: Yes, I believe our government can do whatever we have the will to do. We put a man on the moon didn’t we? If those blood sucking, profit driven, insurance companies who make their money by keeping us away from healthcare providers can run insurance companies, why can the US government? Uncle Sam wants to keep us around until we’re too old to work so we can keep paying into the social security system. See above.

Question: How do you feel about politicians writing healthcare reform versus healthcare professionals?

Answer: I think that healthcare providers are in a better position to understand the lingo and the fine details that go into healthcare bills, but that doesn’t necessarily make them more trustworthy when they champion causes. The letters “MD” does not mean anything if the person lacks integrity. In my opinion, Dr Howard Dean is a man of great integrity. By the way, there are three nurses in Congress: Eddie Bernice Johnson (D-TX), Carolyn McCarthy (D-NY), and Lois Capps (D- CA). I’ve had the honor of meeting each one of these fine ladies. They rock! Johnson and Capps support public option healthcare reform. McCarthy’s website reports that she supports H.R. 3200 – America’s Affordable Health Choices Act of 2009.

That’s it for part one. I’ll write part two later. Like I said, working at UGH has a way of getting in the way of my personal life. It’s been nice talking to you. Keep the conversation going while I’m working this weekend at UGH.

*This blog post was originally published at Nurse Ratched's Place*

When Advance Directives Become Medical Orders: Section 1233’s Relationship To “Death Panels”

DrRich does not visit Facebook, much less have a page there. This is because his college-aged children have informed him that he is too old for Facebook. (They tell him that Twitter is the appropriate social network for people of his age, whose brains are clogged with moraines of proteinaceous deposits left by a receding intellect, a pathology which causes the old dears to go off on wild tangents whenever they have more than 140 characters to work with. “Just look at your blog, Dad,” they point out.)

In any case, having not personally viewed Sarah Palin’s Facebook page, DrRich is not sure whether she specifically identified Section 1233 of the House healthcare reform bill – the part of the bill dealing with “Advance Care Planning Consultation” – as the specific hiding place of the now-famous “death panels.”

But whether or not Ms. Palin herself pointed to Section 1233, that’s the section most politicians and most commentators assumed she was talking about  (presumably based on the observation that 1233 mentions the words “end-of-life care”). And subsequently, in an attempt to appease the rising anger of the multitude, our elected representatives announced they have decided to remove this offending section from any pending healthcare legislation.

And of course, this decision itself has created a backlash. Supporters of Section 1233 – including many physicians, most advocates of thoughtful end-of-life planning, and all critics of Ms. Palin (who would find it objectionable if she found a cure for cancer) – point out that end-of-life planning in general, and Section 1233 in particular, have nothing whatever to do with death panels. They insist that Section 1233 is badly needed, as it would encourage valuable discussions between doctors and patients on issues related to end-of-life care.

DrRich agrees there are no death panels in Section 1233. He also agrees that encouraging discussions on end-of-life care between patients and their doctors ought to be a good thing. And if it were not for covert healthcare rationing he would probably be enthusiastic about it.

But recall that covert rationing is the “dark matter” of the healthcare universe; it’s the unseen stuff that binds together all the far-flung parts into a coherent whole, and explains all the otherwise inexplicably bizarre behaviors we observe there.  Covert rationing corrupts everything it touches, even the good things. So anti-fraud efforts are corrupted into bludgeons to force doctors to place strict compliance with absurd processes above patient care. And clinical guidelines (ostensibly tools to inform and advise clinicians) are corrupted into ruthlessly enforced and legally binding clinical directives from on high.

As a general proposition, we should be vigilant for disguised efforts to corrupt what is useful and good about our healthcare system into instruments of covert rationing. And so we should be concerned about potential mischief from Section 1233 even though it contains no death panels.

Almost as a matter of principle, we should be suspicious whenever public officials desperate to reduce healthcare costs suddenly become passionate and vocal advocates for preserving the individual patient’s autonomy. In this case, we should closely examine our leaders’ enthusiasm for end-of-life planning.  For it looks to DrRich like Section 1233 attempts to convert the relatively benign instrument of advance directives into something potentially much more ominous.

In concept, advance directives are good things. Advance directives allow patients to establish beforehand, generally by means of a written document, what types of medical treatments they would want and not want should they develop a serious, life-threatening illness that leaves them unable to express their wishes. Advance directives are supposed to provide guidance to physicians who, functioning in their fiduciary capacity, are charged with acting in their patients’ best interests, even if the patient can no longer express a preference.

Advance directives can spare patients from being subjected to treatments they would consider demeaning, undignified, wasteful, painful or otherwise undesirable should they become incapacitated at a later date. Therefore, well-constructed advance directives should always operate to preserve the individual patient’s autonomy.

However, advance directives are often less than perfect. In particular, they may express a patient’s imperfect knowledge, or they may be imperfectly expressed.

A relatively young and robust individual often cannot know how he/she will feel a couple of decades into the future, when illness strikes and it is time to exercise an advance directive. This imperfect knowledge is a function of human nature. When you poll people with the question, “On a scale of 1 to 10, what value would you assign to the quality of your life if you were permanently confined to a wheelchair?” you will get a much different answer if you ask able-bodied individuals than if you ask people who actually are confined to a wheelchair. The same thing holds when you ask different age groups how they would value life as an elderly, partially incapacitated person. Young people might say they would clearly find life no longer worth living; old people more often are happy enough to go on with their imperfect life as long as they can. Healthy and young people often view the prospects of disability or advanced age with horror; those who actually become disabled (or old) most often find continued meaning there; often they’ll even tell you they have found a more focused and profound sense of meaning than when they were young and healthy.

So there is an inherent risk in signing an advance directive at an age and in a state of health when it may be difficult to visualize how you will actually feel about life years hence, “when the time comes.”

Furthermore, advance directives may contain unavoidable ambiguities that will require interpretation at the time they are acted upon. For instance, many advance directives contain language to the effect that a patient might want to avoid, say, being attached to a ventilator “unless there is a reasonable expectation of a meaningful recovery.” In the heat of battle, what’s a reasonable expectation? What’s a meaningful recovery?  How does a physician interpret this language in an elderly patient who has just had a big stroke and needs a ventilator, and in whom (with a ventilator) there’s a 70% chance of surviving, but an 80% chance of recovering with a permanent paralysis? Is this a reasonable expectation of a meaningful recovery?

Experienced doctors know that for a patient who is currently incapacitated and unable to express a preference, a prior advance directive may not perfectly express their present ideas about aggressive treatments, and even if it does, it likely expresses them with some degree of ambiguity. So the doctor may take many other factors into account – their personal knowledge of the patient, the opinions of close family members as to what the patient would want done, and the odds of a long-term recovery if the aggressive therapy being considered is used. Then the physician will negotiate with responsible family members to find an approach that seems most nearly to meet the patient’s presumed desires. The advance directive is often extremely important in making these decisions, but it is not necessarily definitive. The appropriate use of an advance directive requires the doctor to act as a true patient advocate, to selflessly place the desires expressed in the written directive in context with everything else that might affect the patient’s wishes, and then make a recommendation that, to the best of his/her ability, honors those wishes.

The point being that advance directives are not designed – and cannot be designed – to be strictly enforced. They are documents that virtually always will require some degree of interpretation on the scene.

But the appropriate use of advance directives becomes problematic under a system of covert rationing.

Insurance companies have conducted major PR campaigns to push advance directives. And the federal government (even without Section 1233) requires Medicare-certified hospitals to inform all patients about advance directives at the time of every hospital admission. (This is usually done by the admissions clerk who takes your insurance information and has you sign all the releases and forms that give the hospital permission to treat you. These clerks are often fine people, but their explanation of the legally-required advance directive document too often takes the form, “This is a paper that tells the doctors not to keep you alive on a machine like a vegetable.”)

One would have to be credulous indeed to believe that the enthusiasm with which the feds and insurance companies have embraced advance directives arises from their fervor for the patient’s autonomy and personal dignity. Their enthusiasm clearly stems from their desire to cut costs, especially costs at the end-of-life.

But despite years of efforts by the government and insurers, the results have greatly disappointed them. The large majority of Americans have not succumbed to all the overtures urging them to adopt advance directives as a means of protecting their end-of-life autonomy against the greedy and unfeeling physicians, who will always insist on torturing them to the bitter end.

Some insurers have reacted to this disappointment by adopting somewhat more coercive approaches, offering, for instance, to refuse to reimburse doctors and hospitals that provide care against the wishes expressed in an advance directive (thus making advance directives a binding document rather than a general expression of desires).  Furthermore, for years physicians have been generally coerced into placing the interests of the third party payers first, which at least threatens to influence how they will interpret the inevitable ambiguities in advance directives. So, as sad as it is to say it, as long as we are operating within a regime of covert healthcare rationing, patients should consider adopting advance directives only very circumspectly, if at all.

DrRich believes that Section 1233 threatens to greatly magnify this problem. Section 1233 “allows” the physician or nurse practitioner providing the end-of-life counseling to fashion an “actionable medical order” that expresses the patient’s desires related to end-of-life care. This order will be widely distributed “across the continuum of care” (presumably electronically, so that everybody taking care of this patient, anywhere and forever, will know about this order).

This, it seems to DrRich, is the real problem with Section 1233, though it is a problem he has not heard anybody else mention. Section 1233 takes the advance directive, which ideally is a guidance document that the physician ought to take into strong consideration when deciding what treatments to offer a patient who is very sick and incapacitated, and converts it into an “actionable medical order.”

A medical order is not subject to interpretation. It’s an order.

Now, DrRich has never heard before – in all his many years in medicine – of an “actionable” medical order. But “actionable” is a legal term of art that indicates that a particular circumstance is appropriate for legal action. So Section 1233 at least implies that a doctor who elects to follow the sense rather than the letter of this actionable medical order (as one does in dealing with a mere advance directive) may be exposing herself to a lawsuit or other legal action, if not by the patient or patient’s family, then by the government.

Furthermore, DrRich finds it notable that Section 1233 does not say or imply that this actionable medical order is to be invoked only if the patient is incapacitated (which is the case for advance directives).  What happens, under Section 1233, if a presently sick patient seems to be of sound mind, and (as not infrequently happens) wants to change his mind when push comes to shove? It would not be inconsistent with Section 1233 to treat the actionable order as legally mandatory even under this circumstance.

And for a doctor on the scene to change that actionable medical order, and replace it with a new one that expresses the patient’s present wishes, might not be a simple or straightforward matter. For Section 1233 also spells out what particular steps must be taken to produce a legal, actionable end-of-life order. This detailed process may be fine if it is undertaken when the patient is completely healthy, and time is not of the essence, and there is no active emergency going on. But what if time is a factor in a presently sick patient who wants to change the order? What if that patient is of sound mind, but ill enough that he does not have the luxury to sit through the procedures prescribed in Section 1233? Would it be possible to legally change this patient’s prior actionable medical order under these circumstances?

Now, DrRich is fully aware that supporters of HR 3200, and especially supporters of Section 1233, will call him a confabulationist for dreaming up this interpretation of the proposed law.

But this interpretation, DrRich submits, is entirely consistent with the actual language in the bill. DrRich also finds it consistent with the spirit of 15 years of efforts, by government and the insurance industry, to browbeat doctors into making all their medical decisions with the strictest possible interpretations of legal, regulatory and financial rules foremost in their minds, whatever that may mean to patient care. And it is certainly consistent with covert rationing.

Section 1233 offers to create a new legal and regulatory consideration – the actionable medical order – that must be navigated when one is interpreting patients’ end-of-life wishes. This new consideration, viewed in the context of a growing desperation to reduce spending on end-of-life care, throws a whole new light on what is currently called an advance directive.

Apparently (for who knows what the legislators will end up doing?), Section 1233 is no longer going to be included in a final healthcare reform bill. But DrRich finds it implausible that provisions similar to those found in Section 1233 will disappear altogether. Perhaps they will re-appear as a last-minute amendment to a farm subsidy bill, or to Cap and Trade legislation, or to a Congressional tribute to Billy Mays. One way or another, similar language is likely to show up again in legislation, and likely it will still provide for actionable end-of-life orders, or some other form of advance directives on steroids.

Until these questions are finally sorted out by our elected representatives, DrRich will tell anyone who asks him that they need to be extremely careful when somebody approaches with an offer to counsel them on their end-of-life rights, so as to preserve their end-of-life autonomy. Beware healthcare workers bearing clipboards.

*This blog post was originally published at The Covert Rationing Blog*

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