Questions surrounding dying and health care

Here is a remarkable article by Atul Gawande in the current issue of The New Yorker.  This cuts through many of the simple-minded arguments of the right and the left, which I have criticized repeatedly, although it certainly comes down hardest on the stupidity of "death panels," or at least the ignorance of those who believe those who shamelessly make such arguments. 

It reminds of a moment when I was still fighting to save my colon and another treatment had failed.  My doctor recommended a colonectomy with the strong possiblity that I would have a bag the rest of my life.  Well, I was astounded.  I wasn't ready to "give up."  Everyone else apparently knew it was hopeless and Tita told me tonight that he was afraid I was going to die.  I asked him if he gave this advice to everyone at this stage of treatment or was it something about my particular colon.  He said "your colon sucks."  That sort of honesty is greatly appreciated in the aftermath.  More doctors should learn how to deal with such unpleasant facts.

Here are some quotes from Gawande:

"This is the moment in Sara’s story that poses a fundamental question for everyone living in the era of modern medicine: What do we want Sara and her doctors to do now? Or, to put it another way, if you were the one who had metastatic cancer—or, for that matter, a similarly advanced case of emphysema or congestive heart failure—what would you want your doctors to do?

The issue has become pressing, in recent years, for reasons of expense. The soaring cost of health care is the greatest threat to the country’s long-term solvency, and the terminally ill account for a lot of it. Twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life, and most of that money goes for care in their last couple of months which is of little apparent benefit.

Spending on a disease like cancer tends to follow a particular pattern. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off. Medical spending for a breast-cancer survivor, for instance, averaged an estimated fifty-four thousand dollars in 2003, the vast majority of it for the initial diagnostic testing, surgery, and, where necessary, radiation and chemotherapy. For a patient with a fatal version of the disease, though, the cost curve is U-shaped, rising again toward the end—to an average of sixty-three thousand dollars during the last six months of life with an incurable breast cancer. Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop...."

"People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives."

"The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.

More often, these days, medicine seems to supply neither Custers nor Lees. We are increasingly the generals who march the soldiers onward, saying all the while, “You let me know when you want to stop.” All-out treatment, we tell the terminally ill, is a train you can get off at any time—just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and to escape a warehoused oblivion that few really want."

"Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer. When Cox was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year."

"The subject seems to reach national awareness mainly as a question of who should “win” when the expensive decisions are made: the insurers and the taxpayers footing the bill or the patient battling for his or her life. Budget hawks urge us to face the fact that we can’t afford everything. Demagogues shout about rationing and death panels. Market purists blame the existence of insurance: if patients and families paid the bills themselves, those expensive therapies would all come down in price. But they’re debating the wrong question. The failure of our system of medical care for people facing the end of their life runs much deeper. To see this, you have to get close enough to grapple with the way decisions about care are actually made."

Drugs and violence

I haven't watched the PBS Newhour for awhile but switched over there after the local weather last night.  There was a very sad and compelling feature on the violence in northern Mexico.  And there was a piece on the new Arizona law which apparently encourages police to harass people who look Hispanic, with at least one sheriff saying that he did not have near enough resources to enforce the law.  My general view is that if you are going to ask Hispanics for their "papers," you must ask everyone to prove their citizenship.  However, beyond that, our drug laws again strike me as ludicrous.   They have never prevented drugs from being readily available, like prohibition did not prevent alcohol.  They cost a lot of money in law enforcement.  They lead to violence in Mexico and here between drug gangs.  I realize the paternalistic point that it is to try to help people avoid becoming addicts, and maybe this can be defended with regard to children.  But wouldn't it make more sense to tax drug sales and spend more on treatment for addiction?  Because drugs are illegal, smugglers are able to make huge profits (and buy weapons and government officials).  Why cannot we just get over the big brother approach and help the taxpayers out at the same time?

Of course, this is a very libertarian approach.  Why don't more conservatives favor it?  You tell me, but I think this is one more example of inconsistentcy in the supposed philosophy of conservatism, which really doesn't amount to much more than a dislike of liberals and a cluster of often conflicting beliefs.  Read The National Review sometime.  The Cato Institute recently had a good critique on the point of our endless wars (by Joe Scarborough in the most recent Cato's Letter, which did not have a link yet).   The cost is not worth the benefit, similar to the "war on drugs."

Addendum 7/31:  Here is an article on the deaths in Mexico.  The main point to me is the lack of facts regarding what is happening and the murder of journalists who attempt to report them.   It is from The Nation, so I take it with a grain of salt.  I'm not sure what the author implies:  that President Calderon and the Army are murdering civilians?  For what purpose?

Trivial bits

The exploration of Scottish and Irish roots and the complicated histories of the countries and other groups (like clans) has paused, to return with a look at the penal laws and the "ascendency" in Ireland in the late 1600's which made not only Catholics but Presbyterians second class citizens, resulting in the sort of persecution that lead many to leave.  But that is for later.

I've got a rotator cuff injury and am getting physical therapy.  We do not know if there is a tear in the top muscle.  Only an MRI would show that and it is very expensive.  Similary, when we were looking at my heart condition we were looking at cholesterol and triglyceride levels.  There is a carotid artery scan that can actually show the amount of plaque in your arteries, but it is very expensive.  Bottom line is that as a society we cannot afford to give everyone what they want in health care.  But in the health care debate it was never addressed what sort of basic health care which people should be entitled.  Rather, it appeared to be a choice between all or none.  But mostly it was ignorant blather.  And conservative seniors complaining about their benefits being examined is about as hypocritical as you can get, especially if they also complain about welfere.  Medicare is welfare.

I have similar feelings about the immigration debate.  If you are going to have a law like Arizona's, then everyone should be checked for their citizenship papers all the time, and that includes white people.  You will probably need to establish some sort of national i.d. program first.  Of course, a lot of the backlash by white people is rascist.  But that does not mean that we must allow anyone who wants to sneak into the U.S. to stay.  We clearly need a guest worker program unless we are willing to see food prices jump 1000%.  And I am all for granting immigrants citizenship, but I don't see why being here illegally should put you at the front of the line.

A friend chided me for having a land phone line the other day.  I do need one to get updates on my satellite tv, but something else has struck me...all those people yacking on or staring at their cell phones everywhere.  I can understand the need for some business people to be accessible all the time, but for most people it is completely trivial.  Yacking on the phone is not particularly something I enjoy anyway.  You miss the nonverbal cues of real conversation.  If you want to send information, use e-mail.  I will continue to only have my cell-phone on in certain situations.  It is just not that important usually for people to easily reach me.

I was greatly irritated when the news broke that Goldman Sachs announced that they agreed to the largest settlement in history with the SEC for their derivative wrong-doing.  I turned on the NBC nightly news and it was not even mentioned as a major story.  The Banksters almost blew up the world economy and everyone has now moved on (or didn't really understand it in the first place).  How can a democracy work when so many of its citizens are not only uninformed but are emotionally resistant to questioning their own beliefs?  That is a question that has been swirling backstage for some time.  So I am checking out my brother-in-law's book:  Critical Masses and Critical Choices (by Kerry Herron and Hank Jenkins-Smith).  Had to skip most of the first part.  Too dry and technical.  But I think that there might be some hints there.

Only more questions

It seems that there is no connection between the Harper who was granted land in the County of Donegal in 1613 and the Harpers who came over to America in 1718.  Donegal is actually in the Republc of Ireland, just accross the border from Derry County in Northern Ireland.  And the land was given to a Cunningham.  The clans Cunningham and Montgomery had a feud which lasted 213 years.

The story of Hugh Montgomery's grant of land in Ireland involves Hugh and Elis O'Neil, the wife of Con O'Neil, the Irish clan leader who was imprisoned in Carrickfergas Castle on the east coast of Ireland.  Hugh made a deal to spring Con on a jailbreak and get him pardoned by the King in exchange for half his land.  During the negotiations, James Hamilton interfered and each were award one-third of the land.  I don't know when the Cunninghams fit into this story in the Ulster Planation, but they were also given land.

According to a BBC article, the most significant events in early Irish history have been seen as the Union of the Crowns in 1603, the Flight of the Earls in 1607 and the Plantation of Ulster in 1610.  It claims that the Hamilton/Montgomery settlement in 1608 should be included.

I was watching part 4 of Simon Schama's History of Britain (free on YouTube) last night and it appears that feelings of national identity in England, Wales, Scotland and Ireland began to develop in the 1200's, especially with the success at conquer by Edward I of England, called Longshanks because of his large frame (exhumation of his body later showed that he was six foot two inches).  Of course, the Highlanders of Scotland did not acquire a national identity at least until much much later.  Their loyalty was still to the clan (kinfolk).  The same holds in Ireland in the 1600's.  The history of the unification of these places into parts of Great Britain is a long and bloody one.  And, of course, Ireland was finally granted freedom in 1937.

Phoebe tells me that in western Ireland there is still great bitterness toward the British, a large part of it because of the potato famine of 1845-48, in which as many as 1.5 million died and many more emigrated elsewhere.   Many of the British of the time saw these people as subhuman.  Paupers in workhouses built many unneccary stone walls which survive to this day.  If you wiki the potato famine, you will find a very disturbing and sad picture.  But that is later in the story of Ireland.  Now I am most interested in finding out information about the Harpers in Ireland before they emigrated to America.  I don't think I will have much success as Rick Harper spent a lot of time working on this.  But it would be interesting to know what life was like on the Ulster Plantation in the early 1700's.  Apparently 40 ships of Scots-Irish left Ireland from 1714-1720.

The only information I have comes from a book my dad gave me on the history of Harpersfield, New York, which says that James Harper, his wife Jennet Lewis, and their five children left because absentee landlords had tripled the rents on their tenant farms and that there was almost unbearable religious intolerance and economic repression for the Scots in Ireland.  They were to reexperience this intolerance when the family moved to Boston two years after they landed at Casco Bay, Maine.

More Family History

I have had guys here cleaning out the ducts and furnaces today, so it is a good excuse for further research, as they are spending most of the day here. Probably the most important discovery today was a new version of The Montgomery Manuscripts on Google, published in 2009 by Bill Montgomery. It has three references to Harper. It notes that the surname Harper is a common trade name. Harps and lyres are common in almost all cultures The oldest one was found in the ruins of ancient Sumer. The first evidence of a Gaelic harp dates back to the first century while the first evidence of a Scottish harp dates back to the 9th century. Apparently, the Scots surpassed the Irish in harp-playing at some point, according to Gerald of Wales. At the time of the Scottish enlightenment (David Hume, Adam Smith, etc.) the harpsichord became very popular. However, this is not a proper harp because the strings are not perpendicular to the soundboard. It is of the zither family, as is the piano.

Two Harpers were granted land in the Ulster Plantation, John Harper of Donaghdie and John Harper of Ballyhay. On May 1, 1613, Sir James Cunningham made a grant of 1000 acres, a portion of which went to John Harper. He was one of six granted a part of the quarter of Magherybegg, in Monagh (alias Ballyghan), in the precinct of Portlagh, baroney of Raphoe, County of Donegal. In 1629, the King of England granted the land back to the son of James Cunningham, also called James, who set up a manor called Fort Cunningham, and had the power to issue tenures. Thus, it appears that this Harper became a tenant farmer.

I discovered that Kilaloo is part of the Limavady area, where the John Harper who emigrated to America was born. Thus, I think that our family history geneology chart is wrong regarding the birthplaces of Mary Aken and Abigail Montgomery. Limivady is the birthplace of the song Londonderry Air, whose mournful tune was recorded as Danny Boy, my favorite old Irish song.

I need to read the book, but also have learned in another on-line book that three Montgomerys emigrated to America at the same time. William and Robert stayed and Hugh returned to Ireland. The original book was written by William Montgomery, grandson of the famous Hugh, who was born in about 1633, and was a very learned fellow.

The earlier reference to Beith, Scotland was borne out. The Montgomerys lived there for many years in the Broadstone Castle, which unfortunately no longer exists, as the area was cleared for a factory during the industrial revolution. Hugh was the 1st Viscount of Montgomery and the sixth Laird of Braidstone. The Montgomerys had a long-running feud with the Cunninghams. Hugh had apparently killed the head Cunningham after he had been insulted by running him through with a sword, but he survived. This feud went back to the 1400's. It will be interesting to see how it manifested itself in the early 1600's in Ireland.
 
Also, dear sister, the evidence appears strong that you are descended from Queen Isabella.  Hope that makes your book even more interesting (she is reading the account by Alison Weir).

Addendum:  "...The Scots who made the move to Ulster seem to have been a relatively balanced cross-section of the national population. At the upper end of the scale were small landowners and substantial tenants who saw the venture as an unprecedented opportunity for economic advancement... below this élite class was a broad social spread which included artisans and labourers as well as farm servants and cottars. Significantly for every four men, three women moved to Ulster... this was an important influence which helped to maintain the distinctive identity of the Ulster Scots..."


T.M Devine
Scotland's Empire 1600 - 1815
(London, 2003)

The Montgomery Family

I have learned that the Montgomery family was very powerful in the lowlands of Scotland.  Hugh Montgomery (1560-1636) had a farm in the North Ayrshire area of Scotland, probably between Ayr and Glasgow.  The town of Beith is mentioned somewhere.  In 1606 he moved much of the family to Northern Ireland, near the town of Aghadowey on the River Bann.  There they remained until they emigrated to Casco Bay, Maine, in 1718, along with John Harper, who married daughter Abigail Montgomery.

Rick Harper sent me a wonderful link to a pdf put together by Bill Montgomery.  You can find it at https://acrobat.com/#d=2LTvcBjDSTKfNIpaDc411Q.  I had to upgrade to Acrobat Reader 9.3 and join the free acrobat.com in order to view it.  Rick also gave me the e-mail to Mr. Montgomery, who has done a series of newsletters, and I am awaiting a response.  Based on the work on the pdf, I have great expectations.

The Harper trail dies out in Northern Ireland.  But I am interested in what caused Hugh Montgomery to emigrate to Ireland in 1606 and what caused him and James Harper, Jannet Lewis, and son John Harper (who would have been 13 years old at the time) to emigrate to America.   The Harpers moved to Boston after two years in Maine and were run out of town by Irish Catholics, in the never-ending dispute between Irish Prostestants and Catholics.  By the way, many in the Scottish lowlands had converted to Presbyterianism, while the Highlanders, who were very poor and violent, remained Catholics (or maybe Pagans).   The lowlanders were thus at odds with the Anglican church, as were the Puritans, and this was another religious division within Protestantism.  And, of course, many Scots were Calvinists, yet another division.  The border wars of the lowlands were fought not only against the English, but also against the Highlanders.

Addendum:  1606 was the year of the beginning of the migration of Scottish lowlanders to the Ulster Plantation in northern Ireland.  Check out this link.

Addendum 2:  Scots-Irish, who were Presbyterians, began emigrating from Ulster to America in 1717 due to the political agreement called the Anglican Protestant Assembly, which largely gave power to the Church of England and the Church of Ireland after William of Orange (who became King William of Britain after James was kicked out in 1689), despite the fact that they had fought on Williams side in one of the many wars.  Here is a wonderful post on Hugh Montgomery.

Addendum 3:  Joan Stewart was the child of James I, King of Scotland, who married Joan Beaufort.  She was known as Joan the Mute, and was married to James Douglas, Earl of Morton.  See pedigree chart here.  See here for Joan Stewart.

These addendums represent facts I have discovered today.  Very rewarding.  An account of the Glorious Revolution can be found in a book called Our First Revolution by Michael Barone.  It was of enormous importance to the founding of America.

Irish Roots

My current hypomanic state has shifted gears.  Last week we had our spring junk pickup by the county and I spent a lot of time with the chainsaw and clippers, filling up a bin.  My right shoulder did not really enjoy it, especially the last day when I dragged some hefty wood down the street.  I guess I am going to have to call a shoulder surgeon.

My sister-in-law, Phoebe, is in western Ireland at the moment.  You can follow her on the Kickinitpostsixty blog below.  And my sister is reading about Queen Isabella (of England, married to Edward II, a Plantagenet, in 1308).  I went to look up Isabella on ny ancestry.com geneology tree and she is there, which got me inspired to inquire and find out that I still have an account (automatically paid by credit card) and so spent hours yesterday fooling around.  And ended up ordering a Deluxe World account for a year.

The original Harpers came over in 1720 (I have a link to the Harper website below).  His son's name was John and he was married to Abigail Montgomery in the U.S. in 1728.  He is from the Londonderry area.  Abigail was from Killallo, in the county of Mayo, which I believe is also spelled Killala and is a small fishing village 6.5 miles northeast of Ballina.  This is where her mother, Mary Aken (or Aiken) was from, who was married to William Montgomery from Adhadowey, which is east of Londonderry in northern Ireland.  I am very interested in why these people emmigrated.

Reading lots of fascinating history and if this keeps up we will probably go to Ireland and Scotland next summer.  We think the Harpers came from Scotland, but the geneology stuff also shows a strong connection with Normans.  If you believe the OneWorldTree at ancestry.com, we are descended from William the Conqueror (1024-1087)(so is Tita--good thing we don't have kids), Hugh Capet (939-996), first king of France, Henry II of England (1133-1189) and Eleanor of Acquitane (1122-1204), whose grave I visited in Chinon, France, a beautiful place.  Not to mention Fulk the Black (967-1040) and Fulk the Rude (1043-1109), Counts of Anjou.

According to the tree, the Montgomeries came over from Scotland in about 1600.  Scots meet the Plantagenet descendants with the marriage of James I Stewart (1394-1437) born in Duferline, Scotland, with Joan Beaufort (1406-1445), from Westminster, Middlesex, England, producing daughter Joan Stewart (1428-1493), born in Perth, Scotland.  That line is all Scots up through the Montgomeries.  Probably nasty hill people.

By the way, Ireland is the only country in the world to have a musical instrument as its national emblem.  It is the harp.

Addendum:  Just read a short piece about Isabella and Edward II, who was not a likeable guy.  For particularly my sister, we are supposedly related through Edward III (1312-1377), John of Gaunt (1340-1399), John Beaufort (1371-1410), to his daughter Joan.

Addendum 2:  I e-mailed our family historian, Rick Harper, who has spent years trying to find original documents in Northern Ireland, collaborating with a Harper who lives there, with little success.  It seems doubtful that Montgomeries lived in Mayo County.  There is an area around Londonderry which is called "Killaloo."  I will bet they were from there as other Montgomeries were from Aghadowey.  Consequently, Rick says that he has "not really gone beyond general history finding out that rent-racking on 20 year land leases and difficulty in ever purchasing your own land was the root cause for relatively fast migration through Ulster from Scotland to North America. Usually the 'Scots-Irish' spent no more than one land lease of time in Northern Ireland before moving on to America. Before that, the Harper's were lowland Scots, primarly on the west coast and just above the English border. The border wars of the 16th and 17th Century were enough for many a lowland scot family to look for a better area to live."

So apparently, this line of "Irish" were Scots passing through on their way to America.

Skepticism, Politics and Attitude

I was sitting out on my deck some time ago watching the sunset and across the street behind the trees were a bunch of kids having some sort of get-together. There were probably six yelling at each other most of the time at the same time apparently nobody listening to each other. Very annoying and somehow indicative of our social fabric. I see this as a metaphor for the 24 hour news cycle and public discussion in politics.

Errol Morris recently had a five-part series of articles in the New York Times Opinionator called The Anosognosic’s Dilemma–Something’s Wrong but You Will Never Know What It Is. I’ve read it a couple times. Here is access to it. One idea that I cannot seem to convey to others regards the question of how we can know what we know. Or how much do we know? Or how we can know what we do not know? Or cannot know? I think Nassim Taleb is great and also entertaining on this stuff, particularly in The Black Swan, but below is an observation drawn from a discussion with the fascinating neuroscientist, V.S. Ramachandram:

“In Ramachandran’’s account, then, we are treated to the spectacle of different parts of the brain —— perhaps even different selves —— arguing with one another.

We are overshadowed by a nimbus of ideas. There is our physical reality and then there is our conception of ourselves, our conception of self —— one that is as powerful as, perhaps even more powerful than, the physical reality we inhabit. A version of self that can survive even the greatest bodily tragedies. We are creatures of our beliefs. This is at the heart of Ramachandran’’s ideas about anosognosia —— that the preservation of our fantasy selves demands that we often must deny our physical reality. Self-deception is not enough. Something stronger is needed. Confabulation triumphs over organic disease. The hemiplegiac’s anosognosia is a stark example, but we all engage in the same basic process. But what are we to make of this? Is the glass half-full or half-empty? For Dunning, anosognosia masks our incompetence; for Ramachandran, it makes existence palatable, perhaps even possible.”

Most people seem to find my skepticism unfathomable and depressing if taken seriously. However, as Morris’ discussion points out, the attitude you have is something you choose. I think that this is one of the attractive intellectual elements of buddhist thought. I am an optimist, but I really have no rational basis for this attitude.

This blog morphed out of an e-mail discussion with some friends on the issues of the day.  I found, of course, that I am basically a liberal. But I have my conservative sides. Anyone who is on the left must acknowledge the mistakes of past progressive intellectuals, and their incredible hubris, on thinking they had figured it out. But they ended up supporting Stalin, a monster. Here is a favorite part of a poem from Yeats called Slouching Toward Bethlehem. The future may be as dark as anything you can imagine.