<?xml version="1.0" encoding="utf-8"?>
<feed xmlns="http://www.w3.org/2005/Atom">
  <title>Barbara Coombs Lee's blog</title>
  <link rel="alternate" type="text/html" href="http://www.rhrealitycheck.org/blog/barbara-coombs-lee"/>
  <link rel="self" type="application/atom+xml" href="http://www.rhrealitycheck.org/blog/2076/atom/feed"/>
  <id>http://www.rhrealitycheck.org/blog/2076/atom/feed</id>
  <updated>2009-01-12T12:14:47-05:00</updated>
  <entry>
    <title>What Were They Thinking?</title>
    <link rel="alternate" type="text/html" href="http://www.rhrealitycheck.org/blog/2009/01/26/what-were-they-thinking" />
    <id>http://www.rhrealitycheck.org/blog/2009/01/26/what-were-they-thinking</id>
    <published>2009-01-27T08:00:00-05:00</published>
    <updated>2009-01-27T02:33:18-05:00</updated>
    <author>
      <name>Barbara Coombs Lee</name>
    </author>
    <category term="Leading Voices" />
    <category term="Contraception" />
    <category term="Sexuality Education" />
    <category term="STI/HIV/AIDS Prevention" />
    <category term="aid-in-dying" />
    <category term="Death with Dignity" />
    <category term="HHS Contraception" />
    <category term="HHS regulations" />
    <category term="patients&#039; rights" />
    <category term="provider conscience" />
    <summary type="html"><![CDATA[The new HHS "conscience" rule is a prescription for health care chaos.    ]]></summary>
    <content type="html"><![CDATA[<p>
As part of its far-reaching social agenda, the Bush Administration
instituted a health care regulation so sweeping and vast, its potential to
wreak havoc seems, to me, unlimited. Popular press tells this story as one
about abortion, but that's just where the tale begins.
</p>
<p>
Clever anti-choice operatives dressed up a malicious rule as an
&quot;anti-discrimination,&quot; measure. In actuality it promotes
discrimination against those in need of care. It enables the self-righteous to
hold patients and whole health care systems hostage to their personal,
idiosyncratic beliefs. The &quot;conscience&quot; rule, went into effect January
19th, 2009, and as such is not subject to the Obama Administration's suspension
of pending rules. 
</p>
<p>
The most dangerous section, <a href="http://edocket.access.gpo.gov/2008/E8-30134.htm" target="_blank">88.4 d 2</a>, bars
health care institutions and employers from requiring &quot;...any individual
to perform or assist in the performance of any part of a health service
program...&quot; if it would offend his/her religious beliefs or moral
convictions. The next line stops employers from taking a person's refusal to &quot;perform
or assist&quot; into account in decisions about employment, promotion,
termination, or the extension of staff privileges. The rule covers anyone
refusing to do their job for reasons of religious belief or moral conviction
--- physicians, nurses, pharmacists, technicians --- apparently even cleaning
and maintenance staff. 
</p>
<p>
The rule makes no exception for refusals that endanger the patient, and
imposes no duty to give the employer or patient ample notice of a pending
refusal. The refusers are not even required to make sure
&quot;non-refusing&quot; staff are ready to cover for them during a crucial
treatment or procedure. Apparently that's someone else's job.
</p>
<p>
So let's get this straight. Anyone, anywhere, anytime, can claim an
authentic, deeply held moral objection to any health care treatment, procedure
or prescription and opt out, on the spot, leaving a patient high and dry. And
there's not a thing the employer can do about it, because the Feds say so. 
</p>
<p>
How is this not a prescription for chaos?
</p>
<p>
The righteous people at the Bush HHS spotlighted abortion, sterilization and
contraception in this rule. But their rule certainly doesn't stop there. <a href="http://www.huffingtonpost.com/barbara-coombs-lee/new-hhs-conscience-rule-j_b_155934.html" target="_blank">We
have already written about the disastrous impact this rule is likely to have on
end-of-life pain care</a>, and especially the urgent intervention against
suffering called terminal sedation. The rule exaggerates an already significant
problem of under-treated pain by empowering health care personnel, including
those at the bedside, who have personal moral or religious beliefs opposing
aggressive pain care, regardless of the patient's agony. 
</p>
<p>
This rule could have a dramatic effect on all patients. How far could this
go?
</p>
<p>
Jehovah's Witnesses, one group with deeply held religious convictions,
believe the transfer of blood and blood products is sinful. I don't think these
good people have ever sought to impose their beliefs on others, or grind health
care to a halt to accommodate their beliefs. But this rule certainly gives them
license to do that if they wish. &quot;Sorry,&quot; the Jehovah's Witness
nurse, technician or aide could say to a trauma patient bleeding to death in
the emergency room. &quot;I can't help, even to carry the blood to the bedside.
Find somebody else to go get it, or set up the IV to deliver it, or confirm
it's the correct blood type.&quot; <em>This sweeping rule even prohibits a
blood bank from declining to hire a Jehovah's Witness in the first place, even
if their convictions would bar them from performing any actual work at the
blood bank. </em>
</p>
<p>
Another religious denomination with strong health care convictions are
Christian Scientists, who adhere to Mary Baker Eddy's science of Christian
healing and reject techniques of medical care. A Christian Science nurse,
technician or other hospital worker could refuse to participate in any aspect
of their job description, with full protection from the federal government. 
</p>
<p>
This is just the beginning --- just a few moral convictions enshrined in
established religious denominations. What about the myriad of personal,
idiosyncratic beliefs and convictions people usually keep to themselves? This
federal rule might coax these private convictions into overt demonstration,
given that we can't discriminate against the person who refuses to do their job
because of them. 
</p>
<p>
Think of people declining to participate in any procedure or treatment that
was tested on animals. Think of people who object, accurately or not, that a
treatment arose from stem cell research. Think of anything a person could
object to, then think how the objecting person could sabotage health care, put
patients at risk and leave personnel policies in taters by exercising their new
found &quot;anti-discrimination&quot; right.
</p>
<p>
Finally, there's administration's absurd estimate of the cost of its rule on
our already strained system. The estimate includes one person's time (they
think 30 minutes will be plenty) to read the paperwork and certify that the
institution complies. Nothing more. They conclude that this modest cost will be
MORE than made up by the fantastic opportunities in health care for all the
people who might have previously thought health care was not the career for
them, because their deeply held convictions would bar them from actually
delivering services. They were so wrong! According to this crazed policy, they
should all apply for employment at their local health care institution, and
finally get the world to conform to their convictions! At last they will really
matter!
</p>
<p>
Unfortunately, patients are the unwitting victims in the service of
sanctimony.
</p>    ]]></content>
  </entry>
  <entry>
    <title>HHS &quot;Conscience&quot; Rule: What About End-of-Life Pain Care?</title>
    <link rel="alternate" type="text/html" href="http://www.rhrealitycheck.org/blog/2009/01/08/new-hhs-conscience-rule-jeopardizes-endoflife-pain-care" />
    <id>http://www.rhrealitycheck.org/blog/2009/01/08/new-hhs-conscience-rule-jeopardizes-endoflife-pain-care</id>
    <published>2009-01-12T08:00:00-05:00</published>
    <updated>2009-01-12T12:14:47-05:00</updated>
    <author>
      <name>Barbara Coombs Lee</name>
    </author>
    <category term="Leading Voices" />
    <category term="Contraception" />
    <category term="Maternal Health" />
    <category term="Women’s Rights" />
    <category term="aid in dying" />
    <category term="Death with Dignity" />
    <category term="Department of Health and Human Services" />
    <category term="HHS Contraception" />
    <category term="HHS regulations" />
    <category term="palliative care" />
    <category term="Secretary Michael Leavitt" />
    <summary type="html"><![CDATA[Most reactions to the HHS conscience rule focus on impending damage to reproductive services. But the rule will surely obstruct and delay good care in many instances, increasing the suffering of dying patients and their loved ones.    ]]></summary>
    <content type="html"><![CDATA[<p>
The administration, hurrying to cement its social agenda in place
before leaving town, adopted a most meddlesome, dangerous rule at
Health and Human Services. 
</p>
<p>
The proposed &quot;conscience&quot; rule is scheduled to take effect on
January 19, 2009. Congress and President-elect Obama have separate and
distinct options to prevent implementation of this rule.
</p>
<p>
Under the guise of protecting those with strong religious and moral
convictions from workplace &quot;discrimination,&quot; the rule encourages
zealous, sanctimonious healthcare workers to act out their convictions
at the expense of the patients they are supposed to serve. 
</p>
<p>
Most commentary on this rule focuses on impending damage to
reproductive services and access to abortion and contraception. But at <strong><a href="http://www.compassionandchoices.org/">Compassion &amp; Choices</a></strong>,
our concerns center on end-of-life care, especially the palliative care
measures that rescue patients from unbearable agony. This ill-conceived
rule will surely obstruct and delay good care in many instances,
increasing the suffering of dying patients and their loved ones.
</p>
<p>
The pertinent section, <a href="http://edocket.access.gpo.gov/2008/E8-30134.htm">88.4 d 2</a>,
bars health care institutions and employers from requiring &quot;...any
individual to perform or assist in the performance of any part of a
health service program...&quot; if it would offend his or her religious
beliefs or moral convictions. Health care workers cannot be fired or
disciplined for refusing to do their job based on their beliefs.
Absolute job protection extends to physicians, nurses, pharmacists,
respiratory therapists, IV technicians -- apparently even cleaning and
maintenance staff. 
</p>
<p>
Compassion &amp; Choices submitted a letter stating its concerns
during the mandatory comment period. The comments went unheeded and the
final rule stands virtually unchanged from the one proposed. 
</p>
<p>
Anyone who works in end-of-life care or health care policy, and
anyone who has cared for a loved one during the final stages of
terminal illness, knows we already have a problem, even without this
rule. Too much pain and suffering goes untreated or under-treated and
too many people die in agony. The Compassion &amp; Choices legal team
has helped raise the standard of care by sponsoring helpful bills and
successfully <a href="http://www.compassionandchoices.org/improvinglaws/courtrooms.php">challenging under-treated pain</a> as a form of elder abuse, but the need for improvement remains great.
</p>
<p>
Now comes a federal rule encouraging workers to exercise their
idiosyncratic convictions at the expense of patient care. Employees
who, for example, might exalt suffering, or disapprove of discontinuing
feeding tubes or respiratory support have license under this rule to
refuse to deliver or support any treatment or procedure. They can do
this without prior notice or the courtesy of providing substitute
staff. End-of-life suffering often presents as a medical emergency.
Precipitous refusal could leave patients in agonizing pain or gasping
for air while others scramble to fill the refuser's duties. 
</p>
<p>
Our staff and volunteers deliver information and support to clients
and their families throughout the nation, and we hear many excuses for
under-treating end-of-life symptoms. Some are profound, like doctors
genuinely afraid to prescribe rapidly escalating doses of morphine and
other opioids that are often necessary to stay ahead of pain. They fear
a whistle blower might alert drug enforcement agents, initiating a
federal prosecution. Some excuses are downright silly, like the
determination to keep a dying person from becoming &quot;an addict&quot; in their
last days.
</p>
<p>
But the most wretched excuse for under-treating pain and other
agonies comes from pious, sanctimonious zealots. I recall one doctor
who told a client's family not to expect total relief because &quot;we all
have to suffer some&quot; in dying. 
</p>
<p>
This particular conviction finds support in the <a href="http://www.usccb.org/bishops/directives.shtml">Ethical and Religious Directives for Catholic Healthcare, (ERDs)</a>
which guide the behavior of every Catholic institution and healthcare
worker. ERD #61 instructs that dying patients whose pain,
breathlessness or other agony cannot be relieved by usual methods
should receive instruction in &quot;the Christian understanding of
redemptive suffering.&quot;
</p>
<p>
Fortunately, presiding bishops and Catholic hospitals enforcing the
ERDs generally lean toward mercy and compassion in their
interpretation. But the existence of this rule threatens that mercy
with a new army of vigilantes authorized to further their patients'
redemption by slowing or withholding the medication that would relieve
their pain. If discovered, such sanctimonious saboteurs could not be
disciplined, fired, or even re-assigned, under this rule. 
</p>
<p>
Most vulnerable is the compassionate end-of-life treatment known
variously as &quot;terminal sedation&quot; &quot;palliative sedation&quot; or &quot;total
sedation.&quot; Conditions like bone metastasis or bowel obstruction can
cause pain so virulent it is relieved only by placing the patient in a
coma with strong sedatives and maintaining the coma until death. <a href="http://www.hhs.gov/news/press/2008pres/08/20080821reg.pdf">The authors at HHS apparently had terminal sedation (TS) in their sites in the draft proposal.</a>
They revealed their disapproval when they erroneously referred to it as
&quot;euthanasia,&quot; citing a 2007 New England Journal of Medicine report that
17% of physicians object to TS on moral grounds. While the final rule
did not refer to this pre-decisional citation, nothing suggests the
department abandoned TS as a target.
</p>
<p>
Pious believers stress conscious mental preparedness for death and
are reluctant to cause unconsciousness unless they deem it absolutely
necessary. (See ERD #61) Unaware of this, we were initially surprised
when Christian medical societies and Catholic hospitals fought a
California bill to inform patients about palliative sedation. <a href="http://www.compassionandchoices.org/righttoknow/index.php">The Right to Know End-of-Life Options Act (R2K) </a>insures
patients will receive information about this treatment option when they
ask. Right-to-life publications reacted to R2K with contempt and
hysteria. They called this simple information law &quot;nurse assisted
suicide,&quot; &quot;euthanasia flirtation&quot; and &quot;suicide promoting.&quot;
</p>
<p>
Such vehement objection suggests right-to-life activists may
sabotage terminal sedation as a treatment option, with job security
guaranteed under the protections of the new rule. 
</p>
<p>
Compassion &amp; Choices has worked for years to raise the standard
of care for end-of-life pain and symptom management. We've litigated
under-treatment and sponsored bills to establish a right to pain care
and mandate pain care education as a condition of physician licensure.
It dismays us to know policies, laws and education efforts could fall
victim to healthcare workers encouraged to impose their personal
religious convictions on dying patients in every state. 
</p>
<p>
Revocation of this rule should be high on the Obama administration's
immediate agenda. If procedural requirements slow the revocation
process, Congress should act immediately to prevent the rule from
taking effect. <strong>Decency and mercy demand swift action.</strong> 
</p>
<p>
<strong><a href="http://capwiz.com/compassionandchoices/issues/alert/?alertid=12389146&amp;type=CO">Click here</a> to urge Congress to take action today. </strong>
</p>
<blockquote>
	<p>
	This piece is reposted from <a href="http://www.huffingtonpost.com/barbara-coombs-lee/new-hhs-conscience-rule-j_b_155934.html">Huffington Post</a>. 
	</p>
</blockquote>    ]]></content>
  </entry>
</feed>
