Thursday, January 14, 2010

Too Important for Doctors? Who Then?

Peter Beresford has a post up at the Guardian blog that is a mish-mosh of ideas about aid in dying. He writes about the British medical system but as you read this, it might be helpful to ask yourself a few questions about the American medical system:

Why is there a shortage of doctors and nurses?
Why is medical delivery dominated by profit-generating practices before care practices?
Are American doctors compensated with higher or lower salaries than those in other Westernized countries?
Why are doctors not currently reimbursed for end of life care planning?
Who is responsible for discussing end of life care with patients?
And what are the ramifications of neglecting those discussions?
If doctor's shouldn't handle end of life care, who should?
Why is the public so uninformed about what aid in dying really is?
Who are the main opponents of aid in dying?
Why are DNR and living wills often overlooked by doctors?
Why are doctor's palliative skills so variable?
Why does Beresford suggest that regulation and reporting of the use of any aid in dying law will dissipate?
What are the problems in relegating aid in dying to "clinics" or practitioners other than doctors?

The view of GP Ann McPherson, who is herself facing inoperable cancer, that terminally ill patients should be able to turn to their doctor for help in dying, can reasonably be expected to carry weight . But the recommendation of this inspired and committed doctor also needs to be set against the realities of NHS general practice in the early 21st century and our relation with it.

This is no longer the age of Dr Finlay and his casebook. In some GP practices, patients can't even be sure which doctor they will see. You can now expect your GP practice to be an independent business employed by the NHS. Doctors routinely earn six-figure salaries, employ business managers and a range of specialists to fulfil government targets and priorities, and are under-represented in areas of disadvantage. Many GPs contract out out-of-hours home visiting services and, not surprisingly in the current business culture, some are reluctant to take on high cost patients. What managerialist considerations may now enter the arena of choice and decision-making about life? It is difficult to make the "business case" for palliative care patients, but worryingly simple to see the economic advantages of assisted dying. Palliative care patients are time-consuming and their needs complex. Doctors' palliative care skills and commitment are highly variable. All the same problems that people with mental health problems have already highlighted in relation to general practice in terms of its lack of time, social understanding and sensitivity can similarly be seen to apply.

It is difficult to see how GPs will readily find the time for the skilled support and counselling that is likely to go hand-in-hand with having an active role in assisted dying. How can this be squared with 10-minute consultations, declining resources and increasing healthcare pressures with an ageing population? The idealised figure of the family GP is perhaps just another expression of our continuing deference to doctors. They are already powerful enough. Would adding to their power by formalising a role for them in ending life be consistent with the rhetoric of the "active" and "expert" patient, or simply reinforce our traditional passivity? The principle might seem positive, but ultimately it will hinge on the particular doctor. Fine, if it is one who knows the patient and their family well and who avoids easy judgments about quality of life.

We've already seen comparable problems arise in relation to Do Not Resuscitate (DNR) orders and disabled people. GPs, of course, will always be able to say, "I did what the patient wanted". But then, as we have seen with plastic surgery for very young women and early decisions about sterilisation and vasectomy, the patient may not always be in a position to know best. What sort of assumptions might be imported, particularly if there is pressure from the family in the case of someone, perhaps with dementia, living in a care home?

Then there are the practicalities. Will doctors be paid on a per capita basis for assisted dying? Will a new corps of medical specialists develop, or will the job be devolved to some new ancillary role? We can expect pressure for a strict system of checks and balances to operate initially, but how long before this becomes more of a mechanical tick-box exercise and people are more routinely assisted into the next world? Any steps towards legalising assisted dying demand a fundamental rethink of policy and practice. It's time to take this discussion out of an abstract and idealised context and examine it seriously in the real world of modern primary care. It is much too important a matter to be left to medical professionals.

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Not My Tax Dollars!

What the Aid in Dying Movement Must Learn from Abortion Advocates.

I'll say this about the New Hampshire aid in dying bill, defeated yesterday in a House vote of 242-113: it wasn't written in a way that could pass.

The Death with Dignity laws, as legal in Oregon and Washington, do a couple of things that make legislators, oftentimes required to vote on private issues that they know little about, more comfortable with the laws: they restrict it to state residents only (no suffering patients from other states driving across borders for compassion), and they clearly stipulate who may use the laws (terminal patients with less than a year to live). If a humane state wants to pass an aid in dying law these days, they'd best do their Death with Dignity homework first.

And if the aid in dying movement wants to extend end of life rights in other states, they best pay very close attention to the strategies used by abortion rights activists over the past few decades. The two groups are fighting to protect or establish patients' rights against the same opponent, "pro-life" groups comprised of the Religious Right (Evangelical and Fundamental) and the Catholic hierarchy.

As to the cast of odd, infuriating, diligent, ideological "pro-life" characters who are enthusiastic about asserting their faith-based laws over the dying - using the public's fear of discussing death, complacent reverence for religion, and lack of knowledge about the dying process to shape ideological laws for the rest of us - I'm not so convinced of their compassion and loving kindness.

However sincere the movement may be regarding their belief in God's laws, there's a willful ignorance of statistics, facts and reality motivating their efforts. They're not very open to reason or discussion - or compromise, as we've seen with health care reform. Society is more than willing to give reverence to religious or "traditional" points of view but until public knowledge of end of life care is increased, aid in dying advocates are left to battle an organized, powerful, well-resourced, mobilized but ideological opponent.

Wesley J. Smith alludes here to the on-the-ground efforts "pro-life" groups are engaged in to limit access to Death with Dignity even where it is legal, sounding much like the anti-abortion activists who work tirelessly to prevent women from accessing legal abortion (and other reproductive services) where they can. Harassing doctors, shaming patients, relegating aid in dying services to special clinics, prohibiting federal funds for the poor (as with the recent health care bill) for end of life planning: this could be the future of aid in dying.

With the health care bill, women's rights groups have begun to recognize just how much ground they have lost over the past few decades by accepting the Hyde amendment as a compromise. What the amendment does effectively is eliminate poor and minority women from access to a legal health care service. But the poor are only one vulnerable group that's been picked off by "pro-life" activists.

The frame of the public conversation regarding women's rights today rests on decreasing the number of abortions instead of reducing the number of unwanted pregnancies. Women have been successfully shamed for having sex, for actively working to exercise their right to physical lives, and for making the difficult decisions about their reproductive health.

As Frances Kissling writes about abortion activists' early decision to put overturning Hyde on hold and focus on preventing a change in Roe v. Wade:

It accepted the racism that lay buried in middle class hostility to poor women, “welfare queens” and the “sexually promiscuous”—all those who might be expected to look to Medicaid to pay for abortions—whom the rest of us should not support.

Not concentrating on overturning Hyde was arguably the worst decision the mainstream choice movement made. No effort at a constitutional amendment ever got off the ground, but the largely unchallenged Hyde Amendment emboldened anti-abortion groups to pick off powerless constituencies one at a time. From poor women they went on to adolescents and secured “parental consent and notification” laws.

As many have noted, government - legislators, the courts and the Supreme Court - have failed to address discrimination against women on Establishment clause grounds. No precedent exits for seeing women's reproductive rights as a "separation of church and state" issue. Case decisions have choosen to protect the "conscience" rights of doctors or providers or the privacy of women (as was used for RvW).

There's much to learn from how anti-abortion groups have pressed their "pro-life" restrictions on access to legal services. The aid in dying movement would be wise to pay close attention to the lessons learned - and being learned - by women's rights advocates.

The aid in dying movement is now, for the most part, working alone against a machine that has a long-established revenue stream, power structure, organization, and stated platform. "Pro-life" groups have not only the powerful and organized Evangelical Right and the Catholic hierarchy to back them up, but they are able to force their religious ideology on the field of medicine because medicine has little incentive to discuss end of life care with patients. Medical associations have been the strongest opponents of a patients' bill of rights for decades. In short, the medical profession will do anything to prevent government regulation.

The recent decision in Montana to legalize aid in dying too was made on privacy and dignity grounds, capitalizing on an "independent" constitution that values such rights. Yet the primary opponents to aid in dying remain "pro-life" groups. Failing to address their established opposition, to ignore the strategies they have demonstrated regarding women's reproductive rights - and this is the big one - failing to educate the public about end of life care, will perhaps lead down the same road we've gone before: legal services that can't be accessed by those most in need.

All patients' rights advocates have one primary opponent: the "pro-life" movement. Forming a coalition that includes LGBT, elder, women's, and disability rights, along with groups like the ACLU, Women's Law Center, The MergerWatch Project, Americans United for Separation of Church and State, Catholics for Choice, and church leaders from the Religious Left, and like-minded medical associations (like OB/GYNs and nurses) will create a coalition broad enough to challenge the "pro-life" platform and their work to impose ideology on how medical care is delivered in this country. Until such a coalition exists, I worry that individual rights movements, like aid in dying, will be left to react to "pro-life" strategies, not anticipate and avert them.

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The Voices Behind the Defeat of New Hampshire's Aid in Dying Bill.

The bill in New Hampshire to legalize aid in dying has been voted down. Below are a few news sources regarding the vote and an interesting appearance of one particular character, Margaret Dore, who has appeared on these pages before.

If you remember, Dore wrote me a series of impassioned emails back in October, then called to rant at me on the telephone for over an hour. We "discussed" the ins and outs of the Death with Dignity bills in Washington, her home state, and Oregon. Numerous times I asked her to calm down. During the call she was demeaning, patronizing, curt, and, to tell the truth, she sounded about at her wits' end. (I received a call of apology two days later, not from Dore but from someone who knows her.)

Dore, it seems, is not wasting away her wits' end just on bloggers like me. Lifenews quotes Alex Schadenberg (a follower of this site) as commending Dore and other members of his Canada-based Euthanasia Prevention Coalition for defeating the bill.

Either I assume that EPC has American members or the group is doing a little cross-border work to save us Americans from ourselves.

From Nashua Telegraph and Vermont's WCAX, via AP.

From conservative lifenews, told with the self-righteousness of one who thinks his God's laws the only:

Representatives defeat a bill on Wednesday that would have made the state the fourth to legalize assisted suicide. Oregon, Washington and Montana already allow the practice and the New Hampshire bill would have targeted the elderly and terminally ill as well.

The House voted 242-113 against the measure, which would have allowed physicians to dispense lethal drugs to patients to use to kill themselves.

The vote came after a majority of the members of the House Judiciary Committee recommended the state House kill the bill. Some lawmakers wanted to send the legislation back to the panel for more study but a majority decided to defeat the measure.

Alex Schadenberg, the head of the Euthanasia Prevention Coalition, told today that Margaret Dore and members of the coalition worked hard to defeat the legislation.

"This vote proves that assisted suicide is a recipe for elder abuse and Choice is a Lie," he said.

The language of the bill could have turned the Granite State into a suicide haven because the measure, HB 304 by Representative Charles Weed, would not only have allowed assisted suicide but would have gone further by making it so a terminally ill patient need not be actually suffering serious symptoms to qualify for assisted suicide.

Rep. Nancy Elliott, a member of the committee opposed to assisted suicide, told AP after the committee vote, "It's not the function of government to encourage suicide in the young or the old. It's a prescription for elder abuse."

Supporters of assisted suicide opposed the bill because it did not take into account current laws and needed more safeguards before moving forward. They promised to bring back another bill with them.

Bioethics attorney Wesley J. Smith criticized the bill when it was introduced and said it would make it so a terminally ill patient need not be actually suffering serious symptoms to qualify for assisted suicide.

"Assisted suicide advocates are cultural imperialists who, as they pretend they only want a 'limited' change in law and culture, actually seek to widen and expand the euthanasia/assisted suicide license through the use of loose definitions and broadly worded 'restrictions," he said.

The Weed measure said a “qualified patient” for assisted suicide "means a capable adult who us a resident of New Hampshire or is a patient regularly treated in a New Hampshire health care facility."

That opens the door to residents of new England states to drive to New Hampshire to kill themselves under the law.

"This would generally spread assisted suicide access to citizens of Massachusetts, Vermont and Maine," Smith explained. "But it also at means people from all over the country could easily qualify for assisted suicide by traveling to New Hampshire for treatment, then obtain the prescription, and go home."

"Usually, state laws and proposals require that patients asking for assisted suicide be residents," he noted.

Kevin Smith of the conservative Cornerstone Policy Research and Bob Dunn, spokesman for the Catholic Diocese of Manchester, also strongly opposed the bill.

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Calls to Include Coverage of Immigrants in Health Care Bill

From The New York Times blog:

The leader of New York City’s massive public hospital system warned this week that the health care bills in Congress would burden safety net hospitals by failing to provide coverage for uninsured immigrants while also reducing federal payments for indigent care.

In a conference call with reporters on Wednesday, Alan D. Aviles, president of the city’s Health and Hospitals Corporation, called for congressional conferees to lift the existing five-year ban on federal health benefits for legal immigrants. Neither the Senate bill nor the House bill currently do so. Mr. Aviles also encouraged the Senate to accept House language to allow illegal immigrants to buy health coverage on new government exchanges at full cost.

To do otherwise, he said, “makes no practical sense and is needlessly punitive.”The call was hosted by National Council of La Raza, a Hispanic civil rights group, and included the United States Catholic Conference of Bishops, which also supports extending benefits to immigrants.

“These exclusions do not eliminate the cost of care for these individuals and families,” Mr. Aviles said. “They merely transfer the costs to providers. And often the uncompensated care burden will be shouldered disproportionately by safety net systems like ours simply because we will not turn these uninsured immigrant patients away.” He added: “We will necessarily have to divert resources meant to support many of the essential services we provide to the community at large.”

Under both bills, federal payments to hospitals that handle large numbers of uninsured patients would decline gradually as more Americans gained coverage. The bills would make insurance mandatory for most people, and the government would subsidize the cost of policies for those with low incomes. Illegal immigrants would not be eligible for the subsidies, just as they typically are not now eligible for Medicare and Medicaid.

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Brown, Coakley, and Emergency Contraception.

The Boston Phoenix has a bit on the issue of provider refusals, the Catholic church and the senate race in Boston:

A lot has been made recently in the US Senate race about Scott Brown's 2005 "conscience clause" amendment; Yvonne Abrahams does a nice job on it in today'sBoston Globe, Janet Wu hit him the other night on WCVB-TV, and of course Martha Coakley ran an ad mentioning it while showing a cowering rape victim in a stairwell. Brown's daughters, in response, held a press conference and recorded a radio ad defending their father against the charge.

The issue is fairly straightforward. If you were, say, a woman in Brighton who had been raped, and you went to St. Elizabeth's Medical Center -- a Caritas Christi hospital -- and asked for emergency contraception so that you would not become impregnated with the rapist's baby, they would tell you no dice. The state legislature wanted to make the hospital provide the pill. The Catholic Church opposed that mandate. (Abraham, in her otherwise excellent column, suggests that the law was largely about allowing individual practitioners to opt out. While that would have been an effect, the legislative battle was entirely about the state's Catholic hospitals' refusal, as policy, to offer emergency contraception.)

There's a legitimate debate to be had on that issue (not to mention, on whether the refusal to provide the pill is an act of good "conscience"), and that debate was waged among the Democrats controlling the legislature, and the Church lost. So, they needed a Republican to try a Stupak-like attempt to introduce a "conscience clause" amendment to the mandate bill, in hopes that they could pressure enough legislators to win an open up-or-down vote. They got Brown to introduce it.

And frankly, his daughters may very well be correct when they insist that this was not because Brown is a cold-hearted, misogynistic bastard. Instead, it was more likely because he owed a big favor to the cold-hearted, misogynistic Church, which had just played a major role in getting him elected.

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Reporting the Texas History/Social Studies Textbook Hearing.

Here are some great sources:

The Baptist Standard covers testimony

The Texas Freedom Network is lifeblogging

KBTX has a news report posted (beware the "education elites")

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