Monday, March 15, 2010

Medicating the Dying.

After noting the false but common accusation that hospice and palliative providers receive - that they simply over-medicate patients to death - Hospice Doctor notes that sometimes, families don't buy the "morphine causes death" hype and ask for more medication. HD explains a situation recently encountered:

Not long ago, I ran into the opposite problem. Anne was in the last phases of her colon cancer, admitted to our inpatient unit and, by the assessment of every staff member, comfortable and pain-free. "Not so," said her two adult daughters, "we want her sedated even more. Our mom is a stoic. She wouldn't report pain to you. But we know she's in pain, and we want her to have more morphine." Anne was intermittently conscious, and she had blinked when the daughters asked her if she was in pain. That was their evidence. But her face and body were relaxed, and her breathing was easy -- all signs that tell hospice workers their patients are pain-free. The staff felt they were being railroaded into giving more medication than they felt was justified. A nursing supervisor recorded a conversation at four o'clock in the morning with one daughter. "Are you telling me you want euthanasia for your mother?" she asked. "Yes" was the reply.

I spent a couple of hours with the daughters over the last two or three days of their mother's life, talking in great detail about how we assessed patients and why we thought she was comfortable. I explained how we balance giving enough medication to relieve suffering while trying to avoid any hastening or acceleration of the dying process. The daughters didn't buy it. Right up to the end, when Anne was deeply unconscious and skipping breaths for 30 seconds or more, they clamored for more drugs. Our staff was convinced that Anne died peacefully, but there was no peace for those she left behind.

What motivates families to make a request like this? There are cynical explanations -- a son needs to get back to work, or there's a lot of money to be inherited. It's hard to believe that getting a will into probate faster would motivate a child to ask for euthanasia for a parent, but I suppose it's happened now and then. Or there may be an ambivalent relationship between players in the end-of-life drama. Perhaps there are unresolved issues stemming from childhood. Now that the child can, in effect, exercise parental power over his parent, it may be tempting to turn the tables once and for all. That, too, has probably happened from time to time.

But I believe the reason lies most often with the intense pain that people feel when their loved ones are dying before their eyes. Pain...and impotence, the inability to change the outcome, to protect a loved one from the finality of death. If I have no power to prevent my wife from dying, then I'll exercise my power to prevent her from feeling any pain at all. Both hospice workers and families share the goal of relieving suffering. But because we work in the fishbowl that is America's ambivalence about dying -- think of the "Obama death panel" insanity -- hospice people also must be sensitive to charges that "all you do is give them morphine and kill them." That need to balance is irrelevant to families grieving the loss of a loved one in advance of the loss itself. And therein, I think, lies the seed of the conflict we had with Anne's daughters. I know of no easy solution to the "medicate, medicate" dilemma other than to educate, educate.

Having been through this myself, I can attest to the fact that I wanted to have more and more meds for my father who was dying of non-Hodgkins Lymphoma. He was restless and agitated - and to my novice but familial eye - he was suffering. It's hard to watch our semi-unconscious loved ones struggle, to feel disoriented by their surroundings, to try to get out of bed repeatedly, and to work hard to breath. But now, as a hospice volunteer, I understand that this is a fairly common experience for the dying - and attending loved ones. But isolation from how we die had convinced me that my father was in pain. What did I know of dying? What the media told me. No one discusses what it can look like, how it can happen. It took the experience of watching other dying patients in a hospice ward to understand what distinguishes pain from disorientation from the natural process.

And yet, as most Americans continue to die in hospitals, we tend to be removed from the dying process, unfamiliar with how patients' die. It's hard to explain to someone what to expect, particularly when they are in the experience with a loved one. Emotion makes everything highly charged.

But educate we must! Until more people understand the differences between pro-longing life and pro-longing death we'll continue to see patients' in hospitals at the end of life despite their desire to die at home.

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USCCB and Catholic Health Association Under Fire From Ultra-Conservative Catholics.

Yesterday, Deal Hudson wrote at the Catholic Advocate that the US Conference of Catholic Bishops has failed to effectively strategize it's opposition to the health care bill.

He also criticizes the USCCB for allowing the Catholic Health Association (CHA) to voice support for the bill. CHA represents the more than 600 Catholic hospitals, hundreds of long-term care and hospice facilities, and three of the top 10 HMOs (health management organizations) in the country. Hudson writes:

At present, the USCCB has not issued any statement directly opposing the Catholic Health Association or any of the Catholic groups supporting the Senate bill such as Catholics United and Catholics in Alliance for the Common Good.

The lack of such a statement allows the press, the White House, and the Congress to hold up these groups as providing official Catholic support to a public which largely does not know any better.

A direct rebuke from the USCCB towards the Catholic Health Association would not be in keeping with what I have termed its strategy of qualified support, but it would certainly keep wavering members of Congress from finding political cover from these groups willing to accept abortion funding.

With a vote on the bill coming as soon as Friday or Saturday, the USCCB is running out of time to get tough. The parish bulletin program emailed last Friday by the USCCB comes too late to have any serious impact on a vote this week.

The willingness of such an intimate partner with the USCCB to break with the bishops on the health care bill is just another aspect of its failure to negotiate powerfully with Congress and speak loudly and clearly to the media on this legislation. Its strategy of qualified support has put the USCCB in a weakened position and allowed the initiative to be taken over by groups with vested interests. CHA wants federal money for its hospitals, while Catholics United and Catholics in Alliance for the Common Good were created precisely to keep Democrats in power, even if it means further endangering the lives of the unborn.

It’s common sense that you can’t win a negotiation if you aren’t willing to walk away from the table. Thus far, the USCCB hasn’t shown that willingness. Bishop Thomas Wenski of Orlando understood this when he wrote a few days ago, “No health-care legislation is better than bad health-care legislation.”

Despite recent and vocal debunking of the accusation that the current bill provides federal funding for abortion, Hudson and Catholic Advocate, along with other Catholic-right organizations, have worked hard to push the conservative USCCB even farther to the right on health care. That the composers of both the Stupak and Nelson amendments deserve criticism for not being right enough and that they are allowing CHA to misrepresent Catholic opinion on health care is a blatant falsehood.

An October poll shows that a full 56% of Catholics think the USCCB should not take a position on health care reform and a majority support both the public option and funding for abortion (again, even though the latter is not included in the existing bill.)

While I'll agree that public opinion is too often falsely touted as the best way to achieve individual rights (historically, meaningful minority rights legislation has required both strong executive or legislative leadership AND public support) Hudson is asking the church hierarchy to take a much more conservative stance than it's parishioners. As we've seen throughout the debate, they certainly have. But that's not enough for Deal Hudson - and he's not alone; he is so far right of Catholic opinion on this issue that he makes the USCCB look more liberal than they really are.

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Moving Legislation Farther to the Right And Calling It Rights.

Tampa Bay Online reports that a number of new bills regarding "abortion and the unborn" are being proposed in a new wave of anti-choice legislation. Modern liberal presidents, of which one could argue we've really only had two since the legalization of abortion in 1973 (and another could argue that they weren't ultimately that liberal) have always triggered a conservative backlash. We're seeing that now with the Tea Party and the disarray of the Republican party as it searches for it's base and works to regroup.

That patients' rights is a focus of such regrouping and "appeal to the base" is no surprise since the current president is focusing on health care reform. How successful these bills are depends on how attentive the public is to such discriminatory efforts.

Though Republican efforts to limit women's rights (and elders') are nothing new, I expect we'll see a giant push at the state level like the Tampa Bay article reports. The interesting nature of these renewed efforts is the way in which Republicans have adopted "women's rights" language to portray their legislature in a pro-woman light. Conservative groups have long worked to claim ownership of "real American values" and "patriotism" and "individualism." Now they're working to co-opt the language of rights by claiming to ally with older concepts of civil rights activism. Glenn Beck encourages Tea Party protesters to act like Martin Luther King Jr.; Sarah Palin works to portray herself as a liberated woman even going so far as to champion her choice to have a down syndrome child as she works agains women's choice; "pro-life" activists like Jill Stanek have warped statistics to propose that abortion equals black genocide; and the conservative Coalition for Patients' Rights works for discriminatory legislation regarding health care reform.

What's happening in Florida is in line with what's happening across the country. Republicans are appealing to (racist?) anti-government sentiment among ultra-conservatives by introducing increasingly conservative (big government) legislation. It doesn't make sense when examined closely and while it's nothing new, it is increasingly couched in benign language about women's and individual rights.

Here's the interesting clip:

About half of the bills come from legislators running for re-election, in a year when Tea Party activists and other GOP malcontents are challenging candidates to prove their conservative credentials. At least one bill was scheduled for a hearing early in the session, by a Republican committee chairwoman who is running for governor.

John Stemberger, of the Florida Family Policy Council, said he's delighted to see this year's show of pro-life initiative. Lawmakers' votes and sponsorship of at least some of the bills, he said, will factor prominently in the guide to political candidates his organization compiles each year for socially conservative voters.

"There's a frustration, I think, in the social conservative community, that Legislature has not been responsive," he said.

Political scientist Darryl Paulson who is a Republican, speculated that "many of these politicians are engaging in symbolic politics," appealing to their base.

Most of the sponsors insist their bills are not intended to interfere with a woman's ability to get an abortion, though all are Republicans who oppose the procedure.

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