The Doctor's Role in Patient Consent

More and more I encounter the meme that doctors should begin receiving spiritual sensitivity training, training that allows them to be more sensitive to a patient's moral and religious values. While the details of what this exactly means are vague, I'd rather my doctor tell me what is medically proven, not what he thinks his knowledge of my religious values dictates. From a recent post at Science + Religion:

... religion informs health values for many patient populations and, as such, deserves consideration within the clinical encounter. If a patient adheres to a religious worldview, then the physician should learn the skills to elicit these values (noting the patient to be the foremost interpreter of these values for themselves) and help the patient to make decisions consonant with their own value system.

We already have an environment where doctor-patient communication is in need of improvement. Asking doctors to tailor information for patients based on their assumptions of the patient's moral and religious values is far too near the paternalistic communication pattern well entrenched. Belief is never monolithic. While the Catholic church may oppose removal of some patients from artificial nutrition and hydration, it would be ethically wrong for a doctor to assume that a patient, because they define themselves as Catholic, would be as well. It seems to me that calls for greater religious sensitivity are misdirected and based on assumptions about moral and religious values, assumptions that are far too simplistic to capture and react to the plurality of many individual faith understandings.

The role of the doctor is not to alter disclosure of medically viable procedures but to inform of all possibilities and options. The patient, in consultation with his or her family, must then consent. And that is the true meaning of informed consent: doctors inform and advise; patients choose the course.

The AMA's "Free-Market" Legacy.

Well here's a fascinating little tidbit from June 9 that I'm slow to come across, below. A new study shows that a majority of AMA members opposed the association's position on health care reform. Now, why would doctors support the expansion of Medicare to cover uninsured patients and not a professional association like the AMA? Why would the AMA prefer "private means" of expanding coverage to the uninsured? It's an easy question to answer when you look at the traditionally conservative, paternalistic nature of the organization and the field. I know that I'm over-generalizing here but the study proves my point that the AMA is grossly more "free-enterprise," and conservative than it's members. (Kind of recalls to mind the nature of the debate between the USCCB and it's unabiding "adherents," the CHA, women religious, and lay members.)

This report makes me pull out an article that the former chair of the AMA's Ethical and Judicial Affairs sent to me when I asked him about health care as a human right. It was published by the Cato Institute in 1998, and alleges that, "The right to health care is perhaps the most widely accepted of all welfare rights." Indulge me while I include the important following paragraph:

In the end, however, that argument is flawed in the same way as any other appeal to the notion of positive liberty. Obtaining treatment for illness or injury is obviously a human need, but hardly a more important need than obtaining food or shelter. As with all other goals, people need the freedom to weight it against other goals and to choose the means of obtaining it. But they cannot define their freedom in defiance of the facts, or at the expense of the freedom of others. Illness and injury are natural risks inherent in life, and all the means of dealing with them -- from aspirin, to open-heart surgery, to health maintenance organizations -- must be produced by human effort to which no one can have a right without the producers' consent.

The producers here, of course, are doctors and the medical industry. How dare sick people expect others to meet their care needs? Let them sink or swim in the free market where medicine should be a commodity and "natural risks inherent in life" should be carried for the sake of liberty.

The report:

Researchers at Mount Sinai School of Medicine have found that the majority of physicians and members of the American Medical Association (AMA) opposed the AMA's position on coverage expansions--the most contentious issue in the recent health care reform debate. The data are published in a letter in the June 9th issue of the New England Journal of Medicine.

In the 2009 health care reform debate, the AMA opposed Medicareexpansions and proposed coverage of the uninsured primarily through private means. The researchers found that only 12.5 percent of all physicians and 14.2 percent of AMA members who participated in the survey supported the AMA's position on insurance coverage expansions. Salomeh Keyhani, MD, MPH, Assistant Professor of Health Policy, and Alex Federman, MD, MPH, Assistant Professor, Medicine, Mount Sinai School of Medicine, co-authored the study.

"Our survey indicates that most physicians and AMA members oppose the AMA's views on coverage expansions," said Dr. Keyhani. "The AMA is a highly visible organization that is presumed by many to represent physicians' opinions on various issues. However, there appears to be a discrepancy between the AMA's platform, the beliefs of its members and the views of physicians nationwide."

Mount Sinai researchers used the AMA Physician Masterfile to survey 5,157 physicians. The researchers secured a 43.2 percent response rate. There were no significant differences in response based on specialty, practice type, or geography. Physicians that were most supportive of the AMA's position were doctors of osteopathy (16.5 percent), physicians whose income was based on billing (16.1 percent), and physicians in rural areas (16 percent). The lowest level of support came from female physicians, with only 7.9 percent supporting the AMA's platform. Physicians who back the AMA's position were more likely to be younger, male practice owners in nonmedical or nonsurgical specialties such as anesthesiology, pathology, or radiology, fields that typically involve less patient interaction.

Respondents to the survey were asked to indicate their support on key issues, including the public option, expansion of health insurance through private means, and support for a proposal that would allow adults 55- to 64-years-old to buy into Medicare. Physicians were considered to be in support of the AMA's position if they agreed with private expansions only and opposed the expansion of Medicare.

Provided by The Mount Sinai Hospital

Idaho and Patients' Rights

The two great opening sentences of Maureen Dolan's CDAPress article on a new Idaho Law:

A new law goes into effect July 1 giving Idaho health care workers the right to refuse to provide end-of-life care they find morally objectionable.

Some fear the legislation places the conscience of a caregiver ahead of a dying person's rights.

I'm constantly amazed at how the media report down what they call the center line on end of life rights. Now, it's actually questionable whether a doctor making your health care decisions for you - despite your advanced directive, living will or other statements regarding informed consent for care - is a violation of your rights or not.

I think two factors feed into this odd kind of reporting; lack of knowledge of the dying process and reporters working to make end of life care stories contentious.

Of course, a doctor or nurse denying a patient legal, medically proven services is a violation of rights. But because religion's last bastion is the death bed, few are willing to call it what it is: a patronizingly old fashioned provider refusal law that pushes paternalistic ideas of faith and medicine on elder patients as a way to deny them autonomy. Just ask women. They've been up against such discriminatory laws for 4 decades. Let's see what baby boomers do with them.

Rationing or Rational Care.

Yesterday PBS posted an excerpt of the Miller Center event "Debating the Ethics of Rationing End of Life Care," a roundtable that included Dr. Arthur Caplan, Dr. Ira Byock, and some guy with a Texas accent going on about "faceless bean-counting bureaucrats." And a nurse, Marie Hiliard of the USCCB's Advisory Council and the National Catholic Bioethics Center.

Oh wait, that was Kenneth Connor from Center for a Just Society where it's all about Judeo-Christian values all the time, whether you're Jewish or Christian or not. Cause if you're not, God and your government think your health care should be! Connor is so radical, I have no idea why he was even included here; his participation only legitimizes the Just Society premise (Their God makes your health care decisions, not yours) and muddies the chance of a productive conversation. I guess the organizers were going for "fair and balanced" controversy.

In other words, moderator Susan Dentzer, editor in chief of Health Affairs, set up the premise that two doctors are pitted against two "pro-life" activists.

Byock and Caplan make strong cases. The other two have Luntz-like talking points. I can't help but feel that a great opportunity was missed here.

Watch the entire broadcast here.

Provider Refusal of Futile Care.

Thaddeus Pope has an intriguing post at his blog today about what can be termed the undermining of doctors' refusal of care. He cites a recent article by Christopher M. O'Connor, associate legal council for Lancaster General Hospital (where I was born), in the recent Journal of Lancaster General Hospital. The article is titled, "Can the Health Care System Ever Say No?" and addresses the lack of clear guidelines and protections for physicians who wish to end care that is not beneficial.

I have written passionately about the problems of provider refusals (so called conscience clauses) that often allow a provider -- a doctor, a denominational institution, pharmacists, etc. -- to deny services that they are morally, ethically, and most often religiously, opposed to. Twenty percent of Americans are treated in Catholic hospitals, for instance, where they are denied medical services that the Catholic Church opposes. These guidelines discriminate against women predominantly regarding reproductive services, but also against gays and the elderly. I strongly oppose this type of discrimination and see it as a violation of patients' rights.

But Connor comes at it from another angle. What about doctors who are, by emotional family members or fearful terminal patients, asked to provide care that will not prolong life? Doesn't the provider refusal law protect them from perpetuating the suffering of patients?

Jessica Mitford wrote in her 1963 bestselling expose of the funeral industry, "The American Way of Dying," that most of us are coerced into buying services and products for our deceased loved ones because we are uneducated consumers, distraught with the emotions that surround death, pressured by cultural forces that dictate a contrived form of propriety, and forced to be consumers of an industry that we know very little about.

The health care industry is not unlike the funeral industry in that we know little about it as consumers until we are forced to make use of it, often under great distress. As death and illness have become more and more institutionalized, taking place primarily outside the home, our culture has become less and less versed in how death occurs, how the medical industry operates, what choices we have in cases of terminal illness. And too, medical technology has created more choices and options, making that removed industry even harder to understand easily. We are uninformed consumers, in other words, lost, when forced to enter into the health care system, in the complications of it all. And the emotion of it all. The responsibility of making decisions is a terrible weight for the ill and their family members. Doctors are looked to as paternal, autoritarian advisors, the ones who know everything and can make the best decisions for us.

This can be detrimental in the case of a young woman who has been raped and happens to enter a Catholic hospital where state laws don't require that the emergency room workers where she is treated inform her of the existence of emergency contraception. Lives are ruined in these instances. But the other side that Connor reminds me of this morning, is when a doctor has to say to an unknowing and distraught loved one that a Do Not Resuscitate order is the very best for their loved one, a path that will cause the least amount of suffering.

In a culture where denial of death is championed, where suffering is glorified, where patients are faulted for "giving up" if they go into hospice, where fighting against death and illness is termed as a battle that requires great strength against all odds, how can we educate emotional family members and patients about how to die? And how do we equip well-intentioned doctors to not only communicate impending death but to make legal decisions about ending futile care? I don't have concrete answers. And obviously neither does the medical industry. Certainly the answers aren't to be found in the cultural stories that we are bombarded with daily by all sorts of media.

I have a hospice patient right now who is having a difficult time understanding that he is terminal. His family members and friends keep sending him cards that say "get well soon." The facility's church group come to pray for a cure for him and tell him that no miracle is too impossible for God. We had a very difficult time finding an effective pain management regiment because he was ashamed to tell the nurses when he was in pain, intimidated by their authority, and unsure of what was happening to him. He failed to understand that there is life between full function and death and that the period of disability he is entering has value -- because like the rest of us he just didn't know. He doesn't know what's coming and he has no reference to the experience in his prior 65 years. He looks to the nurses and doctors for direction; they look to him for decisions -- neither fully able to discuss the matter frankly.

Patients will only be able to make informed medical decisions when they are informed consumers. Unfortunately, so many factors impede proper informed consent. Yet I fear that strengthening provider refusals improperly limits patients' rights, taking the most important decisions out of the hands of those lives directly affected. There's nothing like informed, patient, incremental conversation to prepare a patient for what is ahead. Until doctors and society are willing and able to have those conversations, we will struggle to keep decision-making in the right hands: the patient's.

The post:

His conclusion: "Recent legal decisions have not necessarily prohibited the health care system from refusing to provide care, but they have questioned, and perhaps narrowed, the circumstances in which the medical community can refuse to provide care it believes is both ethically and medically inappropriate."

In a section titled "unsettled legal foundation," O'Connor writes: "Courts have recognized that physicians cannot be forced to provide care that is not beneficial. However, they have failed to announce concrete standards or consistent principles to guide the medical community to resolve disputes between it and patients (and their families)."

O'Connor, actually goes beyond making the point that the law is unsettled ans suggests that it is getting even less provider friendly. Citing the March 2009 Betancourt opinion, he writes that "Although courts, and in some cases, state legislatures, have shown a willingness to recognize circumstances in which the health care system can refuse to continue care that is not beneficial, recent events indicate that the tide may be turning."

Working for Disability Rights and End of Life Rights.

Oh, I'm under fire again. This time mostly from Canadians, likely because the euthanasia bill C-384 is back in debate this week. Opponents are lashing out, even across the border. And at me for what I would consider an incredibly benign post that is all history of disability rights in Canada. Geesh.

I don't know the Canadian bill intimately, admittedly, though I have had interaction with Alex Schadenberg of the Canadian Euthanasia Prevention Coalition. I think he seems like an alright guy with a poorly-defined mission. His work is predicated on legislating his idea (of life) and death that is no longer valid and has been rapidly changing for the past 40 years. I admit that medical advancement has muddied that definition, he does not. "Go get-em" he says to Stephen at Not Dead Yet. I'm -em.

Not Dead Yet caught up with my Vancouver Sun link and dug around til they found the last time they (and "pro-lifer" Jill Stanek) wagged their fingers at me. Stephen posits that supporting Death with Dignity (the aid in dying bills in Oregon and Washington, as I do) means that I'm out to kill the disabled because, um, allowing terminally ill patients, who I admit can be classified as disabled because of their illnesses, to decide when and where to end their lives means that I have some deep-seated intent to start killing anyone that looks at me askance.

I don't mean to be flip about this, nor evasive. I've been accused of not addressing disability rights in my advocacy for end of life rights. I haven't because, while I understand the justified fear that the disabled have of state laws, and of society's and the medical profession's discrimination, I find the definition of "terminal" to not include someone in a wheelchair.

When you're accustomed to systemic discrimination, seeing your fellow-travelers is sometimes difficult. I'm advocating for patients' rights - and that means the right of every one of us, regardless of our color, class, gender, education, or functionality, to make our own medical decisions. The legalization of Death with Dignity in Washington and Oregon doesn't in any way cheapen or make vulnerable the lives of any member of society.

Yet this is the case that many make, out of fear, out of mis-directed self-defense, or out of lack of information regarding the end of life experience and the DwD laws. And this was the case that Bad Cripple made at his site yesterday, oddly lumping me with every person who's ever offended or misunderstood him:

As for the first example, I have news for Neumann: if I have learned anything in the last thirty years of using a wheelchair it is that all people with a disability are not valued to some degree. There is no slippery slope involved. Just ask any paralyzed person or anyone with a disability. Better yet go to a school board meeting and listen to one and all cluck about the need for equal access and then vote down the need for that expensive elevator or lift on the school bus. There is no over reaction here . Indeed, if disability activists are guilty of anything I would argue we are too passive. We need to be more vigorous in asserting our inalienable rights as citizens.

Comparing murder to depriving the disabled of school buses is over-reaction. Again, I agree that our society should work much harder to accommodate the disabled, to wipe away prejudices. Anything less than equality for the disabled is discrimination, plain and simple. But claiming that every supporter of Death with Dignity is out to end the lives of every disabled person is over-the-top.

As for the second example, I doubt Neumann goes through the same mental gymnastics or experience the fear people with a disability do when they go to the doctors office or hospital. Perhaps Neumann can appreciate the difference between the terminally ill and disabled but I assure you most people, doctors included, do not. How else do I explain comments made to me such as "I would be rather be dead than use a wheelchair" or "Are you sure you wish to receive medical treatment" or "How longe have you suffered paralysis?" A clear message is being sent and it is not positive. Indeed, it is deadly and with the right spin can be lethal in some circumstances. My existence is open to question, my life less valuable. This is not paranoia but rather a social fact.

I didn't make those comments, nor would I. I believe that a disabled person has the same rights to be informed of their medical status and options as anyone else. But fear of a law that applies to terminal patients and working to oppose the rights of the dying does not protect the disabled from prejudice. BadCripple's existence should never be open to question! His life is never valueless. Hideous discrimination does exist. This we must work to end.

Sacrificing the rights of some for the fears of others never works. Or every black man with a bandana on his head and his hand in his pocked would be jailed away from every prejudiced little old lady who thought he was out for her purse. In other words, fear is powerful and often justified but it cannot be used to sanction the innocent acts of others.

Somehow I doubt anyone has openly questioned the value of Nuemann's existence or asked her if she really wished to receive medical treatment. Frankly I do not want Nuemann's sympathy or anyone else's for that matter. What I want is support; support for my civil rights. That support starts at the beginning, middle and end of life. I have not had that support from anyone aside from my family, friends and doctor or two. What an indictment on society. How can something as unimportant as the ability to walk have such profound social consequences. Worse yet when I assert my rights I get called "paranoid" by people like Nuemann with a political goal--the legalization of assisted suicide. This is depressing to me and I sincerely doubt I can sway the views of people such as Nuemann. Hence this why I write more about disability rights than the politics of assisted suicide.

Asserting one's rights is not what I was calling paranoid; working to end the rights of others in order to assert oneself is reactionary. I may not be in a wheelchair but I will always support civil rights, equality and autonomy for those who are. I may not understand the kind of discrimination the disabled receive but I do know what it's like to have others legislate me out of my own health care decisions.

And here's the reply I posted at Bad Cripple, below. It's sparked a lot of productive conversation. You can read the other comments here.

My advocacy is for patients' rights. I don't know what it's like to be in a wheel chair, nor what it's like to be black or gay or old and feeble. But as a woman, I know what it's like to have my decisions about my health impeded by the government, society, and other groups. I'm not writing to offer sympathy but empathy, that quality that binds advocates to their objective of protecting individual rights in health care delivery.

What you and I disagree on is the definition of death. Until about 40 years ago, death meant the almost simultaneous cessation of breathing, heart beat and brain function. But not so today.

With respirators and defibrillators we can sustain the first two indefinitely. CPR, 911, paramedics can make our hearts beat and our lungs breath. This is a brilliant thing; yet only 15% survive resuscitation to leave the hospital.

My point is that we have the technology to sustain life but also prolong death. And so the definition of death has changed; natural death is less and less common as we are given feeding tubes, respirators, pace-makers and increased artificial means of maintaining the body. In a world where something like 75% of society says it would like to die at home, 80% die in facilities.

What does this have to do with disability? We will all be disabled at some point. By age, by disease, by other health issues. But we all deserve the ability to make our medical choices. It is this ability - this right - that I advocate for.

What Not Dead Yet, Alex Schadenberg at Euthanasia Prevention Coalition and you miss in my writing is my support for Death with Dignity as legalized in Oregon and Washington (US). DwD involves only the terminally ill with 6 months to live, of sound mind, getting a prescription from their doctor that allows them to choose when and where they die. They are dying of their disease. They are not suicidal.

This is not at all different from a family member honoring one's advance directive to remove a respirator or forgo a feeding tube, nor from a patient's choice to end experimental treatments for cancer. It is a choice for as natural a death as we can have. It is a choice to not lie in a hospital, fully sedated for the remaining 6 weeks of life.

We, as members of developed countries where life-prolonging treatments can simply keep us "alive" for longer than God's planned, must now legally struggle with this new definition of death. And we must do so in a way that honors every patient's choice. Regardless of their race, economics, age, or medical condition.

This is my advocacy: To end futile, unwanted care which prolongs suffering; to educate patients' on what their rights are; and to work to help all of us plan for the end of life so that the decisions are in our hands.

In my work for patients' rights, I'm more of a fellow traveler than, unfortunately, you realize.

Palliative Sedation By Degrees.

From the recent issue of Annals of Internal Medicine: Timothy Quill, Daniel Brock and others respond to an article by Cellarius and Henry on the double-effect and palliative sedation. Their letter, in full below, is concise and informative and I am delighted with their assertion that sedation at the end of life should depend on informed consent and proportionality to pain. If you want more history on the discussion, see the links here.

We generally agree with Dr. Cellarius and Mr. Henry that the main justifications for the different levels of palliative sedation are proportionality and informed consent. For mild levels of distress, mild sedation is appropriate. For more severe distress, heavier sedation (even to the level of unconsciousness) may be needed. With PPS, the level of sedation and the pace of increase are directly related to the severity of otherwise unrelieved suffering. The level of sedation used will be the least amount that can relieve the distress. Although PPS may end with the patient being unresponsive, that is not the intended end point.

We also agree with Dr. Sulmasy and colleagues that the double effect can generally justify PPS (for clinicians who endorse the rule). Relief of suffering is the clinician's primary intent, and although there may be a foreseen risk for hastening death, this is not the clinician's intent (1, 2). However, we do not agree that PPS can only be justified by double-effect reasoning and would not justify it that way ourselves. Intent can distinguish PSU from euthanasia but does not mark the difference between the morally permissible and impermissible, as proponents of double-effect reasoning claim. Death may or may not be intended by patient or clinician in PSU; in some circumstances, intent may be only to relieve suffering and to respect the patient's right to refuse nutrition and hydration, whereas in others intent may be more multilayered (3). How intent applies to PSU is more controversial than how it applies to PPS, but this is less important to us than to Dr. Sulmasy and colleagues in distinguishing between permissible and impermissible actions.

Proportionate palliative sedation is adequate to deal with most but not all intractable end-of-life suffering. We stand by our assertion that PSU will still be needed from the outset in certain compelling cases in which lesser levels of sedation would be insufficient. Consider these real examples:

A terrified patient with advanced oropharyngeal cancer is bleeding from a progressively rupturing carotid artery.

A patient with advanced pulmonary fibrosis is prepared to die rather than be intubated for the third time in 1 month, provided that we promise to aggressively manage his dyspnea. He is now extremely short of breath and agitated, with a carbon dioxide level of 90 mmol/L.

A patient with amyotrophic lateral sclerosis wants to be taken off his mechanical ventilator but is very afraid of suffocation.

For us, these cases are more difficult to justify by using strict double-effect reasoning because death can be both foreseen and to some extent intended by both patient and clinician (4). Stopping at less than total sedation made no sense to the patients, their families, or the clinicians caring for them, and prolonging the patients' extreme suffering by continuing other life-prolonging therapies would have been inappropriate. In each case, the criteria of proportionality were met, informed consent was obtained, and the clinician's primary intent was to relieve the patient's severe suffering; however, to say that assisting these patients to die was completely unintended seems false (3). Rather than relying exclusively on a rule from a particular religious tradition with sometimes unrealistic requirements about intention, it seems better to develop clear guidelines that include ways of responding to some of the most challenging cases.

Exactly. Health Care Choice Reduces Cost.

From at Dr. Elaine Shattner at Huffington Post, a little honesty:

Some might say, even assume that our already unchecked health care costs would escalate; our demanding, aging population would drive the system to even more exorbitant levels.

But maybe, if doctors would provide only the kinds of care people choose for themselves, the price of medicine would go down.

snip

Many patients, a.k.a. medical consumers, would choose less, at least in the way of technology, than their doctors prescribe. And more care.

Not all of us care to die in ICUs, plugged into monitors with breathing tubes in our throats and feeding holes in our stomachs. Rather, the comfort of a hands-on physician, someone who's honest and realistic, who treats what's treatable, who's kind and considerate, is more than many hope for.

I know this based on my experience as a physician who has practiced for nearly 20 years, and as a patient who's had breast cancer and other chronic medical conditions since childhood.

"Please, don't ever let that happen to me" was one of the first things I told my husband after my breast cancer diagnosis some years ago. As a physician, I'd witnessed too many people end their lives in a cloud of treatments, intended to help, but really just prolonging agony.

The U.S. spends over 2.4 trillion dollars each year on health care. Medical outlays skyrocket as patients near death; typical life-extending measures include costly procedures, medications, intensive nursing and care by multiple physicians. Medicare, the largest provider to those 65 and older, exhausts roughly a third of its $400 billion budget on end-of-life care.

Last month the journal Cancer published a troubling report revealing that a majority of U.S. doctors would only raise the subject of DNR orders, palliative or end-of-life care with patients who have metastatic cancer and a poor prognosis. The article generated considerable attention in the press for good reason - it bears on health care costs, patients' rights, doctors' communication and time constraints.

The study findings mesh with my own experiences as a practicing oncologist, when I observed that many good physicians are reluctant to stop prescribing chemotherapy and other treatments even as their patients near death. The reasons vary:

Some doctors sincerely think it's better for their patients if they stay upbeat, and this may indeed be true.

Some recognize that if you tell someone there are no curative options left, they'll go elsewhere. Most people, if they're sensible, do want to get well. And many are desperate enough to try anything if a doctor tells them it might work.

Another, unfortunate factor is financial pressure for physicians; giving treatment is far more lucrative than billing for simple office visits.

Doctors have egos, too. If you can "fix" someone thought hopeless, that's great. It's not just the patient, but your reputation at stake.

And feelings -- I've seen physicians become so invested in a case that they don't realize when therapy is useless.

Yet, maybe some dying patients would appreciate a doctor's honesty.

"Faith Healers" Convicted in Oregon.

Jeff and Marci Beagley were convicted today in an Oregon court for their failure to seek medical care for their 16 year old son, Neil, who died of a urinary tract blockage in 2008. The Beagley's are members of the Followers of Christ Church which prohibits medical treatment for ailments in lieu of prayer.

The case of medical neglect is not the first in the family. The Examiner reports:

The Beagleys are also the parents of Raylene Worthington, whose 15-month-old daughter, Ava Worthington, the Beagleys' granddaughter, died in 2008 of pneumonia and a blood infection that would have been easily treatable. Ava's father, Carl Worthington, was convicted of second-degree criminal mistreatment, yet spent less than two months in jail for her death.

The Beagley's defense in the case of Neil's death was based on his right as a 16 year old to deny care. Yet, the courts found that Neil was unable to make such a decision.

An unusually high number of childhood deaths among members of Followers of Christ Church recently caused Oregon to pass a law that restricts "negligent" parents from using faith healing as a defense against such deaths.

Bible Instruction in Tennessee Public Schools.

How can you teach America's history, politics, culture, foreign policy, or economics without addressing the profound influence of religion? You can't. But it's what you teach about religion that matters - not just to the creation of historical record but to the future of the democracy.

What the continuing contest over the meaning of the Establishment Clause and "separation of church and state" proves is that religious tolerance means many things to many people depending on their objective. (Note the Supreme Court's notorious unpredictability when ruling Establishment Clause cases - or even their avoidance of it when addressing, for instance, patients' rights.)

If the objective of religious education is to promote a particular theological viewpoint - to win souls to one's own conception of God - you're infringing on the separation of church and state. If you're looking at the influence of religion with a critical eye, you're representing the appropriate forces that have shaped the nation. The hinge then on properly approaching religion in public schools - and in society - is not far from the concept of informed consent that patients' rights advocates discuss.

Individual autonomy is incumbent on the choices of an informed conscience. So the new news coming out of Tennessee isn't, in and of itself, alarming to me. Yes, religion, the bible as literature, should be taught in schools. Indeed is necessary for a full educational experience. But how religion is approached is a difficult thing to legislate. Only citizens' constant scrutiny protects the very essential provision of religious tolerance.

I say it again and again: those who work to legislate their particular ideological beliefs are essentially undermining their own right to do so. Tolerance doesn't work one way. The citizens of Tennessee are left to assert that tolerance means both for and from.

From the Examiner:

Tennessee has joined several other states and determined how biblical principles can be incorporated into public school curriculum.

According to the National Council on Bible Curriculum in Public Schools, Chief Justice, Warren Berger, notes, “the Constitution does not require complete separation of church and state. It mandates accommodation, not merely tolerance of all religions and forbids hostility toward any.” Although many individuals are under the assumption that permitting Bible teachings in public school environments breaks a law and goes against Constitutional rights, a complete severance of religious studies in public classrooms is not required.

Each school can elect how the new curriculum fits into its programs and teachings accordingly; however, theTennessee Board of Education has an approved curriculum it will provide to schools to act as a guideline for how instructors are to teach the information. Prior to the Board’s decision, each school district in Tennessee was permitted to institute its own Bible courses. The new guidelines indicate that schools must use the pre-approved curriculum.

The new guidelines include which translations of the Bible can be taught as well as the instruction of religious history and literature of the text. The curriculum also covers the continued religious and social implications of the Bible’s messages and morals.

Demential and Mammograms: Addressing Futile Care in the Elderly.

Ken Covinsky at GeriPal wrote a few days ago about the harm of mammograms for dementia patients. It references a new study and subsequent commentary that address issues of compassionate end of life care, rationing, futile care, and informed consent:

In order to help our patients avoid care that is more likely to hurt them than help them, it is important all of us be able to explain to our colleagues why mammograms are not a good idea in women with dementia. Here is a brief outline of that explanation:

• Mammography frequently finds abnormalities that are not cancer and need further evaluation. The fear caused by these findings, and the stress from the evaluation can be debilitating for healthy women. For women with dementia, the anxiety and stress can be debilitating. And with dementia, this stress is also felt by overworked caregivers.

• However, contrary to common perceptions, the most serious harm from mammography in women with dementia is not false positives, but actually finding a clinically insignificant cancer. The concept of clinically insignificant cancer is not understood by the public. A clinically insignificant cancer is a tumor that if undiagnosed would never cause symptoms in the patient's lifetime. The type of tumors for which mammograms are beneficial will generally be clinically insignificant in women with dementia. Without mammography they will go undetected and not cause problems. But if found, these women will often be given surgery and other invasive therapy. To subject someone with dementia to invasive therapy that has little chance of benefiting them is very unfortunate. Dr. Walter has previously shown that in some cases, this treatment leads to devastating complications, including one case report of a non healing wound infection, and another case of a post-operative stroke.

• Perhaps most concerning is that time spent focusing on nonhelpful care diverts focus from the type of care women with dementia really need. At GeriPal, we have previously discussed how primary care physicians are uncomfortable caring for patients with dementia. It is well established that the quality of care for people with dementia is poor. Interventions that could improve functioning and quality of life are often not done. As we have also discussed, the needs of caregivers get ignored.

Perhaps the most fundamental problems with ordering screening mammograms in women with dementia is that it suggests check box medicine is being provided, and therefore the real needs of the patient and her caregiver are not being attended to.

Our health system fails frail elders with dementia. There is so much more that needs to be done for them. Contrary to those who raise the Rationing charge when it is suggested that women with dementia not get mammograms, this is actually about doing more for these patients, not less. We can start by not doing tests that are more likely to hurt our patients than help, and focusing on what these patients and their caregivers really need.

The Medical Right.

A fantastic article about the medical right, by Kathryn Tucker (wicked smart legal counsel for Compassion & Choices, end of life rights group) at the Journal of Legal Medicine. While her work is on religious imposition on patients' rights at the end of life, her logic and rationale apply directly to women's reproductive rights - indeed to all patients' rights. A quick clip: Medical Right organizations are delving ever more deeply into activism, policy promotion, and politics. They are expanding the range of issues they work on, forming new organizations, and consciously taking front and center roles in media and legal debates. The RCRC Report points out that the Medical Right has created a virtual “shadow medical establishment.” [FN8] Unlike *498 professional societies that represent physicians and other health care providers, medical schools, and teaching hospitals, most of the Medical Right groups are relat- ively unknown because they act outside of the normal channels of medical policy and practice. Evidence of the shadow medical establishment can be found in legislatures, the courts, and obscure profes- sional societies and journals. The goal is to establish an alternative body of medical fact to validate beliefs of the Christian Right and thereby advance its political agenda. Want proof that she strikes a cord? Here's Wesley J. Smith, everyones favorite "pro-life" patriot and Discovery Institute fellow, going wacko over Tucker's article, conscience clauses, informed consent and referrals. I know I've been banging the Establishment drum pretty hard lately but it is the drum that the Religious Right, the Medical Right - and if I may, the Legal Right - fear the most.