And yet the Catholic Church knows that the issue of conscience clauses is about much more than the 750,000 hospital employees who musn’t get their hands on free contraception. At stake is the autonomy of the millions of patients who are treated at Catholic institutions each year. How many? According to the USCCB, there are currently 629 Catholic hospitals serving 20% of all patients in the country (about 50 of those hospitals are sole-providers, meaning there’s no other option for miles). That’s more than 35 million admissions every year, a total that still doesn’t include patients treated in emergency rooms, elder homes, or covered by HMO networks.
These conscience clauses, initiated with the Church Amendment, passed in 1973 only months after Roe v. Wade, have overlapped and evolved to not only protect the individual conscience of health care providers but, with the passage of the Weldon Amendment in 2005, that of “health care entities.” Much as Citizens United designated corporations as people, so have these clauses granted institutions conscience rights that supersede the rights of employees and patients. Not only are services that don’t comply with the Ethical and Religious Directives (ERDs)–written and approved by the USCCB–denied at Catholic institutions, but patients aren’t informed of them as medical options, nor are they referred to other institutions where they might receive them. Informed consent and referrals are considered violation of Catholic teaching.
Of course, the level to which institutions and providers comply with the Ethical and Religious Directives varies greatly. What the church demands, as statistics regarding Catholic contraception usage show, followers and employees have a long tradition of resisting. What often determines the compliance of facilities and employees with Catholic guidelines is the amount of interest the local bishop has in the affairs of institutions in his diocese. In the past decade, we’ve witnessed the appointment of increasingly conservative bishops and the pressure of presiding bishops to pay closer attention to hospitals, in part by the conservative turn of the church leadership and in part by the pressure on health care delivery from choice movements.
Thursday, February 9, 2012
The Conscience Clause: It's Not Just About 750,000 Hospital Employees
Here's an excerpt from my latest at The Revealer regarding the recent controversy over insurance coverage of contraception by Catholic employers:
Sunday, January 29, 2012
The GOP Candidates and Terri Schiavo
In a recent debate in Florida, the GOP presidential candidates--all quite possessed with desire to secure the evangelical and Catholic vote--had a chance to take a swipe at end of life issues, via a question regarding the case of Terri Schiavo. Florida is the state where Schiavo resided until her death in 2005 and where a district court judge (appointed by a Republican) told the Attorney General, the sitting president, and Rick Santorum to bugger off.
While much of the media commentary after the debate simply recorded what the candidates said, few have debunked the meaning or intention of their statements.
Rick Santorum told the audience:
"I called for a judicial hearing by an impartial judge at the federal level to review a case in which you had parents and a spouse on different sides of the issue," said Rick Santorum, a U.S. senator at the time. "And these were constituents of mine. The parents happen to live in Pennsylvania, and they came to me and made a very strong case that they would like to see some other pair of eyes, judicial eyes, look at it.
"And I agreed to advocate for those constituents because I believe that we should give respect and dignity for all human life, irrespective of their condition," Santorum said.
Rick Santorum was very involved in the Schiavo case. Schiavo's parents did petition Santorum for support. They also initiated a media blitz that is still widely recalled today. The then-Pennsylvania senator was strongly behind government intervention into the case, despite his down-playing of that during the debate (most likely because the Republicans have ludicrously put the "keep government out of health care" on the Obama Administration's health care bill).A "pro-life" Catholic who received the ultra-conservative FAMiLY LEADER endorsement in Iowa, has been vocal about his support for Vatican-led efforts to end abortion even in cases of rape and incest and to end the legalization of aid in dying. In keeping with the Schindler family's belief that Schiavo was "disabled," Santorum would most likely push efforts to support these beliefs because, as he has stated, his version of God's law defines human rights. Santorum's version of religious freedom--and that of all the candidate with the questionable exception of Ron Paul--allows for the "pro-life" motivated regulation of medical procedures.
Gingrich got a couple of issues mixed up. He compared the rights of civil patients to those of death row prisoners:
"Well, look," Newt Gingrich said. "I think that we go to extraordinary lengths, for example, for people who are on murderer's row. They have extraordinary rights of appeal. . . .
"It strikes me that having a bias in favor of life, and at least going to a federal hearing, which would be automatic if it was a criminal on death row, that it's not too much to say in some circumstances your rights as an American citizen ought to be respected," Gingrich said. "And there ought to be at least a judicial review of whether or not in that circumstance you should be allowed to die."
Gingrich mistakenly focused on the judicial proceeding in the Schiavo case. By the time Santorum and Republican lawmakers got involved, the judicial cases had been decided. What kept them going was the Schindler's and their allies unwillingness to comply. They kept appealing, then went to federal lawmakers and the media.
Paul answered:
I find it so unfortunate, so unusual, too. That situation doesn't come up very often. It should teach us all a lesson to have living wills or a good conversation with a spouse. I would want my spouse to make the decision.
Perhaps fully understanding that public opinion is in favor of patients' right to medical self-determination (polls in 2005 showed that the Schiavo fiasco was highly unfavorable to most Americans), legal services companies didn't lose the chance to offer their assistance with advanced directives and living wills in the wake of the GOP debate. Republican presidential candidates should pay attention to what end of life issues does to their polling numbers, particularly because their constituents tend to be old and white, the very same demographic willing to pay close attention to these issues. Choice at the end of life isn't as laden with issues of sex, guilt and shame that reproductive choice is.
For more on the debate and candidate's answers about end of life issues, go to GeriPal blog. I've written directly or indirectly about the Terri Schiavo case here and here.
Quick Links
This just in from a friend of mine who is watching the activities of the very powerful Ohio-based "pro-life" group (which recently endorsed Rick Santorum) FAMiLY LEADER, headed by Bob Vander Plaats:
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The prison population across the nation is getting old and prison administrators are grappling with how to best handle health and aging concerns, Fox reports. A new report by Human Rights Watch report on the aging prisoner population is here.
Catholic Health Care West has changed it's name to Dignity Healthcare, to varied reactions. Here's "pro-life" advocate Wesley J. Smith's.
Hawaiians support aid in dying, a new poll finds. While support is slightly higher there, the poll is consistent with attitudes across the rest of the nation.
While I'm all for advancement of medicine--who isn't?--the recent push to "kill" or redefine the persistent vegetative state diagnosis is fascinating and a little worrisome. Ever since the death of Terri Schiavo, activists have been working to undermine the diagnosis and qualify it as a severe disability. Studies like the recent one that shows "some" PVS patients wake up when given a sleeping pill or that EEGs can help find "locked in" patients have caused huge amounts of attention but are strangely politically motivated and seemingly statistically unviable. Furthering understanding of PVS and brain dead patients (both, admittedly, are nebulous terms that offer no hard answers) is necessary. But the irresponsibility of some of the articles these recent studies is hard to stomach. Truth, they say, is truth. With issues as profound as the definition of life, truths look a lot more like wishes, on which beggars and activists can ride.
Sunday, January 22, 2012
Regrets Too Few To Mention
I went to my prom. I got a good education. I married a good man and divorced him at the right time, in a way that allows us to still be friends. I work at keeping the good friends and letting the bad ones fade away. I have a job I enjoy. I've gone out and seen a lot of the rest of the world. I take risks only after counting the effects they will have on me and those around me. All in all, I believe I pass the "if I were hit by a bus tomorrow, I'll die happy" test. What more could a person want from the years stacking up around them? And yet, at the prime age of 43, I think increasingly about regrets.
Because I'm a hospice volunteer, I spend a lot of time with old people. Dying people. Beyond the discomfort, beyond the anger at terminal illnesses, the greatest cause of emotional upset is often what you and I would call regrets. The estranged daughter, the books never read--or written, the years, now collapsed by hindsight, spent working when they could have been spent with friends or family. The chances not taken, the patterns not broken, the cities never seen, the old feuds left festering. Again and again I hear patients remark with wonder and shock that the years have passed them by too quickly. "In my head I'm still 35," one 80 year old friend told me. "How did I get to be this old?" a patient has asked. "Be careful," she said, "the years go by too quickly to count."
An article by Bronnie Ware, a palliative care worker, has received much attention over the past year. In it she lists the five primary regrets she has heard from her dying patients. They are:
1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.
2. I wish I didn't work so hard.
3. I wish I'd had the courage to express my feelings.
4. I wish I had stayed in touch with my friends.
5. I wish that I had let myself be happier.
It would be easy for me or anyone to shrug off these five wishes. They are vague--what is happiness?--and a little too close to the saccharine platitudes our society substitutes for good, hard thinking. Why worry about it--the regrets slated for the end of my life, or even dying itself--now, when I'm busy living? But I can't shrug them off because, like Ms. Ware, I too hear them said under my patients' breath, see them in the excitement of a dying person when the phone rings, read them in the subtext of comments like, "Of course my daughter can't come visit, she's far too busy with the children."
In an exchange this week with a friend who is caught in a malaise he can't quite diagnose, I noted the above list. He read it and quickly brushed it off as "follow yr heart" stuff. It's all well and good to regret the possible, he noted, but what about regretting the impossible? My reply was that many things we come to regret appear possible only in hindsight.
Years ago, when I lived in California and desperately wanted to write, a lover told me that the most important and difficult thing in life was to be happy. He was a beautiful man from Israel, married, a surfboard maker in the process of trying to earn his keep by making instruments. He was a craftsman, spiritual in what we call that California way, conscientious and thoughtful. I didn't believe him because I was too enamored by all the tales of disturbed and unhappy writers, sacrificing for their craft, dying unhappy and often unpublished. I thought unhappiness and bitter sacrifice were the hallmark of genius, of greatness. Now I know that, in his own way, he was onto something.
Lest those of you who know me suspect I'm going soft, have no fear. There's nothing more difficult, braver or more dangerous than living as you wish. It is in that struggle to live without regrets that justice is grounded. It is in making a good life that we define our rights--to be a woman doctor in the 50s or a tranny flight attendant or a black president or a friend good enough to admit when we're wrong. These happinesses, great or small, are not eccentricities, on the whole, but a daily assertion that we are going to do what we want, as much as is possible, for ourselves and the people around us--because if we don't we will regret it. It is because we don't respect ourselves, our desires, our years, our urges to do something else, our want to be happy, that results in regret.
Joan Didion writes in "On Self-Respect," an essay in Slouching Toward Bethlehem, "Most of our platitudes notwithstanding, self-deception remains the most difficult deception. The tricks that work on others count for nothing in that very well-lit back alley where one keeps assignations with oneself: no winning smiles will do her, no prettily drawn lists of good intentions." That list is the one that my dying patients are reading and rereading their last days. They are tallying up the bad decisions, the wrongs, the complacency, the fears obeyed. Didion continues:
To live without self-respect is to lie awake some night, beyond the reach of warm milk, phenobarbital, and the sleeping hand on the coverlet, counting up the sins of commission and omission, the trusts betrayed, the promises subtly broken, the gifts irrevocably wasted through sloth or cowardice or carelessness. However long we postpone it we eventually lie down alone in that notoriously uncomfortable bed, the one we make ourselves. Whether or not we sleep in it depends, of course, on whether we respect ourselves.
So, perhaps here then is the trick to dying without spending your last years and months consumed by regret in an uncomfortable bed, the trick to not waking up one day to find that your years have run by without notice, to not getting caught in routine and obligation. It is: to remember that the dying comes. For all of us. It's not a tragedy to be avoided, it is a certainty. Easier to face it with "toughness, a kind of moral nerve" which results from owning up to mistakes and braving the ramifications of our decisions.
I have to go now. I have a book to write.
Tuesday, December 13, 2011
Aid in Dying in Massachusetts
It's no surprise that the Massachusetts Medical Society has affirmed it's stance on opposition to aid in dying. The Dignity 2012 campaign which has put aid in dying on the ballot next year is receiving a lot of attention and I expect the MMS was under pressure to reassert their position. The Boston Globe article is interesting for one point, however: the announcement was made without MMS polling it's members. In other words, the decision was made by leadership. I suspect that, like most medical societies in the US, leaders feel that coming out in support of aid in dying is still too nuanced a position and one that continues to undermine faith in doctors if publicly stated. Yet, the double effect, a practice that allows a doctor to give a patient a lethal dose of medicine so long as the intent is to keep the patient comfortable, even if it kills them, is still upheld across the country. Between aid in dying and the double effect, one has to ask, where is the bright line? At public perception, apparently.
The National Catholic Register also weighs in this week on Dignity 2012, outlining for readers what the Catholic Church is doing in that state to combat legalization (and neglecting to count Montana as one of the states where it is legal). Most of the article's quotes from Catholic leadership echo last June's announcement by the Catholic Church of a new campaign to fight aid in dying. A clip from the article:
In Masses geared to area legal and medical professionals, Cardinal Seán O’Malley has taken the opportunity to speak out forcefully against the initiative.
“We hope that the citizens of the commonwealth will not be seduced by the language, ‘dignity, mercy, compassion,’ which are used to disguise the sheer brutality of helping someone to kill themselves,” said the archbishop of Boston at the Red Mass on Sept. 18.
Stephen Crawford, communications director for Dignity 2012, the supporting group of the initiative, thinks the “people of Massachusetts are ready for the discussion on this issue.”
Janet Benestad, chairwoman of a Boston archdiocesan steering committee on physician-assisted suicide, said that a group of about 12 people, some with connections to Harvard Medical School and the New England Journal of Medicine, were able to get an initiative petition certified by the Massachusetts attorney general on Sept. 7.
Supporters of the petition then had to gather 68,911 signatures for it to be considered by the state Legislature. Brian McNiff, a spokesman for the Secretary of the Commonwealth of Massachusetts, said as the Register went to press Dec. 8 that the group had filed over 80,000 signatures but that his office still had to count and verify them.
Peter McNulty of the Massachusetts Catholic Conference said that “the bishops are very much concerned with this issue,” and a steering committee has been formed to recommend a course of action. The conference is the public-policy arm of the state’s bishops and represents the four dioceses in the commonwealth.
Monday, December 5, 2011
Canada Revisits Aid in Dying
A wheelchair bound Canadian grandmother, Gloria Taylor, who has Lou Gherig's disease has asked the British Columbia Supreme Court to allow her doctors to give her a lethal dose of medication so that she can end her life. The decision is expected next year and lawyers predict that the case will be taken to the Canadian Supreme Court. This rather standard article from the AP has a paragraph that caught my attention:
In the latest case now unfolding, Taylor's lead lawyer, civil liberties defender Joe Arvay, argued to the court that assisted suicides were taking place despite the ban, a practice he likened to the illegal "back-alley abortions" of the past.
I've been urging women's rights advocates in the US to pay closer attention to the opposition to certain medical services and treatments. Often those who oppose abortion--"pro-life" and "family and marriage" groups and the Catholic Church, among others--also oppose the legalization of aid in dying. Shame often functions to keep proponents of such services quiet. And yet, abortion and aid in dying have taken place for as long as humans have existed. How they are provided and regulated is perhaps the paramount question for society; they are issues that test our humanity and require us to reckon with a new definition of life and death created by modern medicine.
Saturday, November 26, 2011
Hospitals and Disability in Elders
Hospitals are dangerous for elders. If you care for a hospitalized elder and can read one article that will "change for the better how you care for them," GeriPal recommends this one (From the JAMA, in which activities of daily living are given the acronym ADLs!):
In older patients, acute medical illness that requires hospitalization is a sentinel event that often precipitates disability. This results in the subsequent inability to live independently and complete basic activities of daily living (ADLs). This hospitalization-associated disability occurs in approximately one-third of patients older than 70 years of age and may be triggered even when the illness that necessitated the hospitalization is successfully treated.
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