Monday, August 3, 2015

Make today a good day

Some of you who get this blog through email will see this twice. It is about a book that discusses end-of-life care, important since my dad's latest stay in the hospital has stretched to seven weeks. So I sent it out to my family email list. It is also worth posting to my blog for those who aren't family.

My aunt and cousin suggested the book Being Mortal, Medicine and What Matters in the End by Atul Gawande. I agreed it sounded interesting and timely, so my cousin had a copy shipped to me. Thank you. I finished reading it this morning so that I could summarize it before I go to Texas tomorrow.

Gawande is a surgeon and also a writer. This is one of four books he has written. He is also a staff writer for the New Yorker and this book is an expansion of ideas from articles he wrote for that magazine. The book explores two related topics.

The first topic is what do we do with our elderly when they are no longer able to care for themselves? We've come a long way from old people being stashed in poor houses in horrifying conditions (alas, still the norm in some parts of the world). Social Security and Medicare closed the poor houses and care was taken over by hospitals. Between cost and space those became too much, so nursing homes were created.

Alas, the driving forces of a nursing home are patient safety and ease of staff responsibilities. Residents were denied permission to walk unassisted if they were at all unsteady. They were all woken at the same hour, dressed and herded to breakfast together, sent to the day's activities together whether individual residents wanted to or not, and put to bed all at the same time. Residents hated the places because they were made to feel helpless, all choices of life taken out of their control.

In 1983 Keren Brown Wilson built the first assisted living facility. The difference from a nursing home was basic: the residents were in charge. Staff were there to assist as needed, but the residents called the tune. If a resident wanted to be irresponsible, such as not taking meds, that was up to the resident as would be the case for the rest of us who are well enough to manage our own lives. A person should not lose autonomy because they need help in living.

The concept of assisted living has blossomed. Alas, it has also become corporatized. Some places that call themselves assisted living centers are more like regimented nursing homes than a match for Wilson's vision.

Bill Thomas of Chase Memorial Nursing Home of New Berlin, NY experimented with another direction. He convinced the directors to bring in resident dogs and cats and added 100 parakeets (which arrived before the cages). The transformation of the human residents was amazing. A good deal of the improvement because they now had a purpose in caring for the dogs, cats, and birds. Thomas also got the place involved with the school next door. Residents tutored students. Kids adopted new grandparents. Existence had meaning. The place became Eden Alternative.

The book also has the story of Jacquie Carson of Peter Sanborn Place. It was built as apartments for independent low-income seniors. But seniors tend to become dependent. Carson responded by offering services as her residents needed them and resisted mightily efforts to send her residents to the horrors of nursing homes. She succeeded quite well. She showed the concept of assisted living was also available to low-income people.

The book also discusses places such as NewBridge and Green House. There appears to be several of these around the country.

The second topic of the book is what to do about care for those that have conditions that medicine can no longer fix. Doctors tend to be optimistic about the usefulness of treatment. Patients and family members tend to mentally inflate that optimism even more – if a doctor says 1-2 years the family tends to think 10-20 years. All this aggressive treatment tends to be expensive, its first problem. So the question is: When should we try to fix and when should we not?

Gawande is introduced, and introduces us, to hospice care. We're used to this being for the dying, but Gawande says many of the ideas should be introduced into the discussion long before the final days. It is definitely a discussion that initially can take to two hours. It focuses on these questions:

What is your understanding of the situation and its potential outcomes?

What are your fears and what are your hopes? The fears might be around pain, dependence, loss of enjoyable activities. The hopes might include spending time with extended family for as long as possible.

What are the trade-offs you are willing to make and not willing to make? One man said as long as he could watch football on TV and eat chocolate ice cream, he was good. This discussion also explores the trade-off between pain now and more time later.

What is the course of action that best serves this understanding?

Once the course of action is set in motion a main question is: How do we make today a good day?

In 2010 Massachusetts General Hospital did a study of 151 patients with stage IV lung cancer. Some of them explored those questions and others with palliative care specialists. The result: those who worked with palliative care "stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives – and they lived 25 percent longer." (emphasis in the original.) Yes, many of those aggressive treatments do much more harm than good, its second problem. We live longer when we stop trying to live longer.

The book can be hard to read as Gawande delves into several terminal cases, including his father's case. Even so, he writes with great humanity. And he makes a lot of sense. I'll be exploring these ideas with Dad and his care team. I'll also keep them in mind as I also become old and frail. Highly recommended.

Yes, I head to Texas tomorrow for the Reconciling Ministries Network Convocation. I'll be gone six days, so may not post much in that time. I'll have a big post about the Convo when I get back.

Saturday, August 1, 2015

Inherently violent

Melissa McEwen of Shakesville wrote a post yesterday about the current Planned Parenthood fake scandal. This mess prompted Indiana Gov. Mike Pence to order an investigation of Planned Parenthood facilities in the state. The investigation, of course, found nothing illegal. McEwen says the goal of the investigation was always intimidation.

McEwen went on to say the anti-choice movement has an inherently violent ideology. With a statement like that I have to follow the link. In this second post from 18 months ago McEwen quotes an anti-choice crusader:
But abortion doesn't unrape a woman. An abortion just adds more violence on top of the first she endured.
McEwen and her commenters have at it. Yes, an abortion does not "unrape" a woman. But it does "un-pregnant" her. And that frees her from the violence aimed at her consent, the difficulties and disruption of a nine month pregnancy, and the pain and danger of childbirth. Both the rapist and the legislator grab control of her body without her consent. A forced pregnancy is violence, much more so than the abortion.

Happy Birthday – sing freely now

If you're in a chain restaurant, such as Red Robin, and a customer has a birthday the staff will come out and perform for the honored guest. But they won't use the song all of us sing at home. The reason is the restaurant doesn't want to pay copyright royalties.

The company that owns the copyright, Warner/Chappell, has been collecting up to $2 million a year for commercial uses of the song (such as appearing in a movie or publishing a piece made of variations on the tune). They have owned the copyright since 1935. Jennifer Nelson created a documentary about the tune and Warner/Chappell required a payment of $1500 because the song appeared in the documentary. The movie no doubt included a few details about the origin of the movie and Nelson suspected the copyright expired. So she sued.

Warner/Chappell was supposed to supply details of their claim a year ago as part of the case's discovery process. But they just released a few more documents, saying they "mistakenly" forgot to release them last year. The new documents are from 1927 and before and they show the famous tune as not being under copyright, but in the public domain. What Warner/Chappell had copyrighted was a particular setting of the tune, not the tune or lyrics. So sing away without worrying about breaking the law (not that most of us did).

A lot of people are watching this case. Warner/Chappell may have to refund a lot of improperly collected royalties.

Friday, July 31, 2015

Not a fear of gays

Some quotes from the week.

Nat Baimel summarizes homophobia this way:
Homophobia isn't a fear of gays. It's a fear you may BE gay.
The rest of his discussion is cute.

Imani Gandy on the latest Planned Parenthood fake scandal:
When it comes to advocating for policies that would actually support Black women and help them raise healthy children, far too many anti-choice activists are silent. But when it comes to using Black women as a cudgel to make a point about the evils of abortion and Planned Parenthood, it's damn near impossible to shut these activists up.

And an update. I had written that the lawyers in Michigan's same-sex marriage case asked the state for nearly $2 million in fees, since they won and the state lost. My friend and debate partner offers some clarification.
I've never heard that the winner in any civil lawsuit can file (essentially, sue the loser) for reimbursement of legal costs. But that is true in civil rights and civil liberties cases (and perhaps some others; I wouldn't know). The federal court where the original suit was argued decides how much to award (and that decision can be appealed).

Two pro-democracy reasons justify this practice:
(1) the winner was entitled to her / his rights or liberties; the loser (usually a government entity) should pay for denying those rights and putting the winner through so much effort and expense to obtain her / his rights; AND
(2) to give Powers (usually government) reason and incentive to respect the rights of the less powerful (me and you).

In this huge marriage equality case, the winners can indeed sue for reimbursement of legal fees and anyone could foresee a big bill.

Let us notice that we Michigan taxpayers get to pay TWICE -- for our Attorney General's spending on legal services to defend the indefensible AND for the winner's legal costs. All because our AG chose to fight to the end where other attorneys general around the country chose more wisely.

Facing a difficult path

Back in 1974 the Equality Act was introduced to Congress to add sexual orientation to the list of categories in the 1964 Civil Rights Act. In 1994 an effort was started to pass a stripped down version, one that prevented discrimination only in employment. Gender identity was added in 2007. Yup, those efforts did not lead to actual laws.

Now the Equality Act is back. It covers both sexual orientation and gender identity and covers the same broad categories of the Civil Rights Act – protections in employment, housing, public accommodation, and such things as equal credit, education, jury selection, and all federal programs. The public accommodation part is expanded and those new areas affect the original categories of the Civil Rights Act, meaning this new bill also expands women's rights. The religious exemptions in the Civil Rights Act are not changed, so there can be no exemption for sexual minorities.

Yes, this is only a bill and it faces a difficult path through Congress, so it may take years. But the LGBT movement is the strongest it has ever been.

Properly vetted

I've finished reading the book The Nine, Inside the Secret World of the Supreme Court by Jeffrey Toobin. It covers the Court from about 1981 when Reagan nominated Sandra Day O'Connor to 2007 (my paperback version has an extra 15 pages covering parts of 2008). There is, of course, some discussion of the progressive Earl Warren and Warren Burger Courts that much of modern Court history since then is in reaction to.

The book has a look at all the justices of this time as well as all the major cases. For instance, after reading through the confirmation hearings of Clarence Thomas we read such things as: He is the most beloved by staff (he makes sure to know the names of all the clerks, not just his own, as well as the names of all the Court support staff). Because of his nasty confirmation he is the most reclusive, rarely talking to other justices in person. He has a huge motor home, which he and his wife, along with a great nephew in their custody, use to escape Washington on weekends, usually going to NASCAR events.

The major topics of the Court during this time are, of course, abortion and affirmative action. The author delves into the abortion cases during this time because each one was seen as an attempt to overturn Roe v. Wade. The closest attempt was Planned Parenthood of Southeast Pennsylvania v. Robert P. Casey (the state governor) in 1992. The state legislature had passed a whole slew of restrictions to abortion, then tried to argue that all must be kept (overturning Roe) or all tossed out. One restriction was that a married woman must have the consent of her husband. That didn't please O'Connor. She, Souter, and Kennedy teamed up to preserve the right to abortion. It was her ideas that brought in enough votes for a majority. Though William Rehnquist was Chief Justice the justice who mattered was O'Connor.

The other big case discussed in the book was Bush v. Gore\ of 2000. The author spends 50 pages on the details and discusses all the way this ruling was wrong and how it showed a majority of justices were highly partisan. O'Connor was a Republican and was desperate for her party to win. But O'Connor quickly found G.W. Bush to be appalling and damaging to the party and country. That was confirmed by the cases having to do with the Iraq war and Guantanamo detentions.

Alas, O'Connor's husband John was worsening under Alzheimer's, so she resigned to take care of him. Then shortly after that he had to be put into a home. He no longer remembered his wife and fell in love with a caretaker. O'Connor ended up not needing to care for him and felt she had resigned for nothing. She was especially annoyed because her replacement was Samuel Alito, who, with Roberts, pushed the court quite a bit to the right.

Some of the other things I learned through the book.

* Scalia may have the biggest mouth and the most colorful dissents, but he is annoyed at how little influence he has over the other justices. His opinions don't change their minds.

* The views of Clarence Thomas are so far to the right that he is rarely asked to write a majority opinion. He does write dissents, though other justices tend not to sign on to them.

* When Byron White left the Court Bill Clinton had a convoluted time coming up with a replacement. He finally settled on Ruth Bader Ginsberg. His nomination of Stephen Breyer went much more smoothly.

* The time 1994-2005 was the second longest in Court history without a change in justices. The longest was 1810-1823. All the tasks reserved for the justice with the least seniority were things Stephen Breyer did for 11 years.

A major theme of the book is the conservative and fundamentalists ongoing efforts to control the court. Their efforts could be summarized as, "Reverse Roe. Expand executive power. Speed executions. Welcome religion into the public sphere. Return the Constitution from its exile since the New Deal." That last refers to the Federalist belief that the Constitution has been ignored since FDR and practically banished under the Warren and Burger Courts. Conservatives know this would only happen through the Supreme Court and all their efforts are focused on making the politics happen so that the right president nominated the right justices (ones vetted by the likes of James Dobson). Roberts and Alito were very much vetted by the fundamentalists. They desperately wanted to avoid another Kennedy or O'Connor who had all the conservative credentials, yet voted much of the time with the liberal block.

The book is quite detailed about hashing out the various cases. We rarely hear about any of it. The author says he research included long discussions with the justices and with many of their clerks. However, justices and clerks said not to identify who said what. So, yes, this is the inside story.