What Paradox? Patients Nor Doctors Want To Plan For Death.

Dr. Drew Rosielle at PalliMed gives another angle to the issues I've been thinking about since coming across an article, noted below, on a new study about doctor's conversations with their patients about end of life care options.

Rosielle writes that a recent survey of patients provides paradoxical answers to questions about their knowledge of end of life care choices and tools:

Only 5 patients reported a discussion about ADs with their oncologist. When they asked patients if they would like to discuss ADs with their oncologist, only 23% said they would (this is similar to the finding in the study 10 years ago). When, however, they asked patients which, of all their doctors, they would prefer to discuss ADs, a plurality said their oncologist (48%). That is, if they have to do it, they'd prefer their oncologist. Notably the vast majority of patients (87%) thought that physicians admitting a patient to the hospital should ask about ADs (they indicated this was not only ok but an important thing to do). Thus, the title of their article, and this post - 'Paradoxes in ACP....'

(They also asked patients about knowledge of hospice care and palliative care. 21% of patients reported knowledge of 'palliative care' vs. 81% for 'hospice care,' and hardly anyone said they knew anyone who had received palliative care.)

From outside the medical world looking in, I think there are a few factors here that add up to no paradox at all: patients don't want to talk about or plan for their deaths; doctors are seen as authorities, patients expect them to guide or inform of medical choices and patients follow their cues; doctors too don't want to talk about death either.

An article in the New York Times yesterday highlighted a new survey of doctors that asks when patients should be told a fatal prognosis, asked about a DNR (Do not resuscitate order), informed of hospice and palliative care, or asked about their death-site preferences.

Time's Denise Grady reports:

Dr. Nancy L. Keating, the first author of the study and an associate professor of medicine and health care policy at Harvard, said not much was known about how, when or even if doctors were having these difficult talks with dying patients. But she said that her research team suspected that communication was falling short, because studies have shown that even though most people want to die at home, most wind up dying in the hospital.

The researchers surveyed 4,074 doctors who took care of cancer patients, instructing them to imagine one who had only four to six months left, but was still feeling well. Then the doctors were asked when they would discuss the prognosis, whether the patient wanted resuscitation or hospice care, and where he or she wanted to die.

The results came as a surprise: the doctors were even more reluctant to ask certain questions than the researchers had expected. Although 65 percent said they would talk about the prognosis “now,” far fewer would discuss the other issues at the same time: resuscitation, 44 percent; hospice, 26 percent; site of death, 21 percent. Instead, most of the doctors said they would rather wait until the patients felt worse or there were no more cancer treatments to offer.

Doctor's need to take the lead in discussing end of life options with terminal and elderly patients. Their patients are waiting for them to do so.

Amish Exempt From HCR? Conservatives Say Unfair!

Hilarious! Raymond Arroyo writes at Laura Ingraham's site that it's just not fair that Amish and Old Order Mennonites are exempted from the health care mandate - but the rest of the religious groups in the country aren't!

The exemption of Amish and Old Order Mennonites is not confirmed. But it should be included: theirs is a long-standing objection to insurance of any kind and applies to health and home insurance (they don't have cars). They take care of their own community's needs by pooling money to meet health care needs of members. I wrote about this yesterday.

UPDATE: Malkin's saying it too! Nice. Wingers envying the Amish. Let them all adopt the Anabaptist faith and politics, give up their cars, wear bonnets, and drop out of politics! Anabaptists don't pay taxes because they don't use them.

The fact that Arroyo wants to exempt Catholics and, well, that new religion, teabaggers, from the mandates is silly. I don't at all agree with the way the new bill is shaping up - it severely damages women and it's a blatant give-away to the insurance company - but simply disagreeing with a bill doesn't mean you can adopt a new religious policy against insurance.

Both the Senate and House Health Care bills have one religious conscience clause. Unfortunately it only applies to the Amish and a few other religious sects. According to the Watertown Daily Times, the exception would allow the Amish to avoid the health insurance mandate and a fine should they refuse to carry health insurance.

So get this straight: the Amish, Old Order Mennonites and possibly Christian Scientists can opt out of the health care plan, with no penalty, while Catholics and other Christians are bound to pay premiums that fund abortion. How is that fair? Hundreds of Christian, pro-life hospitals, doctors and nurses may soon be forced to violate their consciences and offer or perform procedures they consider morally objectionable.

The Congress could care less. If the pro-life community fails to demand conscience clause protections, and loudly, they could find themselves morally compromised by this new health care regime. Even the leading voice for conscience clauses, the US Catholic bishops, have been muted in recent days, preferring to convey their desires via letters and statements issued by their Conference.

Now is the time for a full throated, public discussion of this critical issue. The ethical future of health care is being negotiated now in the back rooms of Capitol Hill. Of course if everyone would rather focus on Harry Reid's comments, I suppose there is the option of riding a horse and buggy to work. Though some Catholic doctors I know will look pretty silly in those straw hats. Let me know what you think at raymond@raymondarroyo.com

ACP Guidelines for Physician-Patient-Caregiver Relations.

The American College of Physicians published a paper this week on the guidelines for ensuring good relations between physicians and their patients and caregivers.

A majority of patients say they would like to die at home yet about 80% die in hospitals or other care facilities. If efforts to improve patient choice at end of life continue, a shift to home care will tax caregivers and doctors as they learn to better communicate to meet patient choice. The paper is timely.

ScienceBlog writes:

The Journal of General Internal Medicinehas published "Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships." The text and an online appendix of resources to help physicians manage relationships with patients and caregivers are available athttp://www.acponline.org/running_practice/ethics/issues/policy.

"The ethical guidance outlined in this paper is intended to heighten physician awareness of the importance and complexity of the patient-physician-caregiver relationship," said ACP President Joseph Stubbs, MD, FACP. "It is essential for physicians to consider quality of life for both patients and caregivers."

The paper -- endorsed by 10 other professional medical societies -- defines caregivers as relatives, partners, friends, and neighbors of patients who assist with activities of daily living and complex health care needs. It outlines four primary principles for physicians, who may face ethical challenges collaborating with patients and caregivers while preserving the primacy of the patient-physician relationship:

• Respect for the patient's dignity, rights, and values should guide all patient-physician- caregiver interactions.

• Effective communication and physician accessibility are fundamental to supporting the patient and family caregiver.

• The physician should recognize the value of family caregivers as a source of continuity regarding the patient's medical and psychosocial history and facilitate the intellectual and emotional transition to the end stage of serious chronic illness.

• When the caregiver is a health care professional, the physician should draw appropriate boundaries to ensure that the caregiver is not expected to function in a professional capacity in relation to the patient and that the caregiver receives appropriate support, referrals, and services.

"Patients depend on caregivers for assistance with managing complex care and communicating with health care professionals," said Virginia Hood, MBBS, MPH, FACP, chair of ACP's Ethics, Professionalism and Human Rights Committee. "Physician recognition of the value of the caregiver role may contribute to a positive care giving experience and decrease rates of patient hospitalization and institutionalization."

Although hospice and palliative care address the impact of illness on both patients and families, the authors write, historically the patient-physician relationship has focused on the patient and his / her rights and interests with less attention to the patient's experience within the context of his / her family and social relationships. Contemporary bioethics with its emphasis on patient autonomy and confidentiality has supported this model but is beginning to recognize the need for a family-centered approach.

Joint Statement on Religion and Public Life Released Today.

After all the noise over the holidays about religion and the public square, Wake Forest University Divinity School convened a panel of religion and public affairs experts to create a document that addresses separation of church and state, religious tolerance, and other pertaining issues.

The result, "Religious Expression in American Public Life: A Joint Statement of Current Law", was released yesterday in DC. Spokesmen say that while many on the panel disagree about what the laws should be, they were able to agree on what the laws are currently.

It's a project that makes great sense to me. I'm looking forward to reading the entire document though anything remotely related to the Brookings Institute is likely to get laughed at by the Right.

From the Religion Press Release Service:

As the role of religion in public life continues to spark intense political debate and high-profile court cases, a group of diverse leaders from religious and secular organizations has issued the most comprehensive joint statement of current law to date on legal issues dividing church and state. Muslim, Jewish, Sikh and Christian leaders from the evangelical, mainline and Catholic traditions joined with civil liberties leaders to draftReligious Expression in American Public Life: A Joint Statement of Current Law, released Tuesday at the Brookings Institution in Washington D.C.

Are persons elected or nominated to serve as government officials required to place their hands on the Bible when making oaths or affirmations? May elected officials reference religious ideas and discuss their personal religious beliefs while operating in their official capacities? Are individuals and groups permitted to use government property for religious activities and events? Must secular nongovernmental employers accommodate employees' religious practices? These are just a few of the questions that the diverse group of leaders sought to answer in the 32-page document.

"The role of religion in public life has long been a source of controversy and litigation," said Melissa Rogers, director of Wake Forest University Divinity School's Center for Religion and Public Affairs, which produced the document. "We have brought together a diverse group of experts on law and religion to clarify what current law has to say about some of these matters."

Members of the drafting committee include those associated with faith-based groups as diverse as the Union of Orthodox Jewish Congregations of America, the Islamic Networks Group, theBaptist Joint Committee for Religious Liberty, the Queens Federation of Churches, the American Jewish Committee, the General Conference of Seventh-day Adventists and the Ethics & Religious Liberty Commission of the Southern Baptist Convention. Former staff members of the ACLU and People for the American Way also served on the drafting committee. On Tuesday, representatives of the American Center for Law and Justice, the American Jewish Congress, theFreedom Forum First Amendment Center and other members of the drafting committee will join Rogers for a two-hour discussion moderated by Brookings Institution Senior Fellow and Washington Post columnist E.J. Dionne.

"Some of these groups are often on opposite sides of church-state litigation," Rogers said. "But while the drafters of this document may disagree about how the legal line should draw be drawn between church and state, we have been able to come together and agree in many cases on what the law is today."

The document is drafted in a question and answer format for easy reference. Previous joint statements have addressed the role of religion in public schools. This is the first document of its kind to address a wide spectrum of issues related to the role of religion in public life, Rogers said.

The 35 questions and answers that comprise the joint statement address religion and politics; religious gatherings on governmental property; religious expression in the workplace; and chaplains in legislative bodies, prisons and the military; and other issues.

In addition to printed copies of the joint statement, the Center has published an interactive Web version of the statement at its website: http://divinity.wfu.edu/rpa/. A full list of the members of the drafting committee as well as their photos and brief bios, are also posted there.

Discrimination by State.

If you're gay, you're better off in the Northeast, if you're terminally ill, you're better off in the Northwest. Or so the country stands now where predominantly Northeastern states allow same-sex marriage and Northwestern ones allow aid in dying.

That's the point John Crisp makes at ScrippsNews today:

A good friend is in the middle of a challenging battle with cancer. She reports lying in bed the other night after the lights were out and musing about whether, if she decided to leave her home state of Texas, she would choose a state that permits physician-assisted suicide or one that would allow her finally to marry her long-time, same-sex partner.

Unfortunately, no state in America allows both. For some reason, the states with progressive laws on physician-assisted suicide are in the northwest: Washington, Oregon, Montana. And the states that permit same-sex marriage are mostly in the northeast, like Massachusetts, New Hampshire, and Vermont. Texas isn't likely to permit either one anytime soon.

These two issues may not appear to have much in common, but both have an equally difficult time getting much traction in our country. Some states -- California and Maine, for example -- have made tentative moves toward permitting same-sex marriage and then pulled back, contributing to the frustration that gays and lesbians must feel as they try to gain a completely equal footing with heterosexuals in our culture.

Equality and laws that prevent discrimination against the dying or homosexuals seem to have a regional prevalence. But the issue is more complicated than regional flavor.

Because of Federalism, the autonomy afforded states to make their own laws by the US government, laws have often lingered in places with strong cultural prejudice toward minority groups. The most obvious example is the South and slavery. But other factors are at play with same-sex marriage and aid in dying.

Some state constitutions are more open to personal autonomy, like Montana's which the Supreme Court there ruled on New Years Eve did not prevent aid in dying.

Some states have a stronger religious foothold where everything from education to women's reproductive rights are kept in the last century to appease the powerful church organizations there.

Homosexuality is clearly more tolerated in urban areas, like the Northeast, where gays have gravitated from their rural homes or where living openly doesn't mean risking a lynching.

And a concentration of advocates can make a state more tolerant of their rights, like San Francisco.

While federalism works wonderfully for state-based issues like, say - and this is a stretch but the only two examples I can come up with - protecting local industries or tackling local environmental issues, it's a disaster for protecting minorities and the rights of those discriminated against.

The federal government can legislate laws that override state laws but the bill must specifically tackles such inequalities. Not all federal laws trump state laws. And the US Supreme Court can make case decisions that translate to compliance for all states but, as we've seen with abortion, states then can, under the influence of discriminatory groups there, work to mitigate such laws by limiting access.

Our constitution may claim that equality is guaranteed but cultural forces work tirelessly to maintain discriminatory practice in states where religious bias is strong and powerful. Changing the culture is no easy task but doing so is perhaps the only way to prevent federal court decisions from creating a backlash locally, as abortion did in the 70s and 80s all over the country, or civil rights legislation did in the South.

Would you move to a new state if it provided you more freedoms than the one you're in? Well, I'm in New York City these days and it's a city/state I chose because of tolerance and diversity. As our population becomes more mobile, less tied to home and family, and more urban, values migrate and discriminatory practices are ameliorated. I'd be a fool to suggest that the gutting of rural America is caused by a desire for greater tolerance of "non-traditional" lifestyles but that's certainly a factor in state cultures.

But that kind of movement is a privilege. Not everyone has the resources to pick up and go to a new place. If you're gay in rural Texas, best to keep your head down or get out. And that is the fallacy of US equality. Some states or regions are more equal than others.

Switzerland and Assisted Suicide.

There's been a rumble in Switzerland for months. Many politicians are concerned that their country will become an assisted suicide vacation spot and want to shut down the laws that make AS legal. Talk has been made of simply making it illegal for foreigners to travel to Switzerland for that purpose. But today, a report from RT that says maybe the country wants to end the legality of AS altogether:

Aeschbacher, a Swiss lawmaker, says that when the legislation on euthanasia was first conceived 70 years ago, it did not foresee special clinics helping people die. He says that it is therefore in need of an update.

“It terrifies me that Switzerland could make those changes,” says Debby Purdy, who lives in the UK and suffers from multiple sclerosis.

Purdy is not packing her bags for Switzerland, but says she wants to have the option to do so if her pain becomes unbearable.

In Britain anyone helping Purdy to end her life could be sentenced to up to 14 years in prison.

“It’s not that I think it should be an easy option, but I think if people suffer unbearably, only the person who's suffering can decide whether it is bearable or unbearable – doctors can't tell you that your pain is being managed fine. If you're in pain, you're in pain,” Purdy says.

Thus, before the issue of assisted suicide makes it to the inevitable referendum, the Swiss government and the public have a few important questions to answer.