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April 28, 2005

Getting beyond questions about “quality of life”—“What can I do to make her life easier?”

Love and Alzheimer’s

by Summer Bethea

Robertson and Muriel McQuilkin’s unintended testimony

“A talented and creative artist, an enthusiastic radio show host, a happy mother and wife — no one would doubt the preciousness of Muriel McQuilkin’s life — until her decline into the darkness of Alzheimer’s disease.

“Muriel spent the last decade of her life battling Alzheimer’s, while her husband, Robertson, battled critics of his decision to stay home with her.

“Robertson’s decision became controversial when he resigned as president of Columbia Bible College to care for Muriel full time. With his 22-year career at a peak, many urged him to put Muriel in a nursing home and continue with ‘God’s work.’

“God’s work, Robertson concluded, was taking care of his wife. ‘There are others who can lead the Bible college,’ he said, ‘but I am the only one who can care for Muriel.’

“He didn’t debate the ethical value of her life. The McQuilkins’ story is about abiding love.

“‘I wrote a book on ethics; I even researched euthanasia,’ Robertson said. ‘I know the issues. I am keeping a promise: ’til death do us part. I made my decision because I love her. I thought, Here’s my lover; what can I do to make her life easier?’”

Focus on the Family Magazine

Additional articles about the twenty-five years Robertson McQuilkin spent caring for his wife Muriel are available at the website of Christianity Today:  “Muriel’s Blessing,” “Living by Vows,” and “The Gradual Grief of Alzheimer’s.”

Deciding for others is what many of us will be required to do...

What Living Wills Won’t Do

by Eric Cohen

The limits of autonomy

“...For decades, we have deluded ourselves into believing that living wills would solve our caregiving problems; that healthy individuals could provide advance instructions for what to do if they became incompetent; that such a system would ensure that no one is mistreated and that everyone defines the meaning of life for himself until the very end. But it is now clear that living wills have failed, both practically and morally.

“In the March-April 2004 issue of the Hastings Center Report, Angela Fagerlin and Carl E. Schneider survey the social science data, and their conclusions are damning: Most people do not have living wills, despite a very active campaign to promote them; those who do usually provide vague and conflicting instructions; people’s opinions often change from experience to experience; and people’s instructions are easily influenced by how a given scenario is described. These are not problems that any reform can fix. A person simply can’t grasp in the present every medical and moral nuance of his own future case.

“The dream of perfect autonomy—everyone speaking for himself, never deciding for another—should fade each time we change a parent’s diaper....

“We will face imperfect options, as societies always do. In navigating the dangers, we will need to rely on more than the gospel of autonomy, and we will need to confront the failure of living wills and the ideology they rest upon: that deciding for others is always to be avoided. In reality, deciding for others is what many of us will be required to do as parents age or spouses decline, and we will do well to accept this burden with moral sobriety rather than pretending it does not exist.”

Eric Cohen is editor of The New Atlantis and resident scholar at the Ethics and Public Policy Center.

Ethics and Public Policy Center – April 12, 2005

The Hastings Center report, “Enough: The Failure of the Living Will,” by Angela Fagerlin and Carl E. Schneider, is available online.

Transforming the crime of assisted suicide into a “medical treatment”...

Life-or-Death Decisions

by Rita L. Marker

Cutting corners at end of life?

“Names can be deceiving, and in the case of California’s ‘Compassionate Choice Act’ (Assembly Bill 654), the deception can be deadly. This measure, now being considered in Sacramento, would transform the crime of assisted suicide into a ‘medical treatment.’ It would give doctors the power to prescribe lethal drug overdoses to patients for the purpose of causing death.

“‘Compassionate Choice Act’ may sound good. But don’t be fooled. Consider the following:

•    “Assisted suicide could be a ‘choice’ for the comfortably well off, but it could become the only ‘medical treatment’ that many Californians can afford....

•    “AB654 would let government health programs, managed-care programs and HMOs cut costs by approving prescriptions for suicide.

•    “AB654 is virtually identical to Oregon’s assisted suicide law. In Oregon (the only state with a law permitting assisted suicide), both Medicaid and private insurance pay for assisted suicide....

•    “Doctors could help mentally ill or depressed patients commit suicide....

•    “AB 654 has no safeguards for the patient at the time the drug overdose is taken. All safeguards apply only to events leading up to the prescription’s issuance....

•    “Accurate tracking of abuse or the number of assisted-suicide deaths would be difficult. As with Oregon’s assisted-suicide law, AB654 requires that doctors report all assisted suicides to the state, but there are no penalties for not reporting....

•    “Assisted-suicide activists could facilitate deaths of patients they have not treated....”

Rita L. Marker is a California attorney and executive director of the International Task Force on Euthanasia and Assisted Suicide (www.internationaltaskforce.org).

San Francisco Chronicle/SFGate.com – Monday, April 11, 2005

Dr. Peter Rasmussen:  “...just because it’s a slippery slope doesn’t mean we shouldn’t go there.”

Oregon Sees Fewer Numbers of Physician-Assisted Suicides

The percentage of patients receiving psychiatric referrals before they get a lethal prescription remained at 5%, unchanged from 2003

“Fewer lethal prescriptions were written in Oregon last year than in 2003, and fewer people took them under the auspices of the state’s ‘Death With Dignity Act,’ which allows physician-assisted suicide. But what has opponents of the law most concerned is the lower number of people receiving psychiatric treatment before receiving their prescriptions.

“According to the Oregon Dept. of Human Services’ recent report on physician-assisted suicide, 37 terminally ill Oregon residents committed suicide under the law in 2004, compared with 42 in 2003. Also, 60 lethal prescriptions were written in 2004 compared with 68 in 2003.

“In all, 208 people have now used the law to hasten their deaths. Although there was a drop-off from the previous year, these were the second-highest totals recorded in the history of the practice, and assisted-suicide opponents point to many areas of concern.

“‘Physician-assisted suicide is not needed and not natural,’ said oncologist Ken Stevens, MD, vice president of the anti-assisted-suicide group Physicians for Compassionate Care.

“The AMA is opposed to assisted suicide, calling it incompatible with the physician’s role as a healer....”

amednews.com (American Medical Association) – April 4, 2005

Overturning conventional wisdom...

It Didn’t Start with Dolly

by Wesley J. Smith

Human cloning is closer than you think

“Here’s an easy pop quiz: What’s the name of the first cloned mammal? If you answered, ‘Dolly,’ that would be...wrong.

“Wrong? But wasn’t Dolly the sheep touted by the media as the first mammal ever made ‘asexually’ through the cell nuclear transfer cloning process? Yes, but there are a lot of things you hear from the scientific/media establishment that are not exactly accurate.

“The first cloned mammals to be brought into being ‘asexually’ via cell nuclear transfer cloning and gestated through birth were lambs born nearly two years before Dolly. As reported by Ian Wilmut and his team in the March 7, 1996, Nature, they took the cell nuclei out of sheep embryo cells, placed each into a sheep egg that had had its own nucleus removed, fused them, and thereby generated cloned sheep embryos.

“Wilmut’s team then implanted their embryos into ewes, resulting in five live births. Two lambs survived. The scientists announced this breakthrough as follows: ‘Here we provide the first report...of live mammalian offspring following nuclear transfer from an established cell line.’ Wilmut explicitly identified the lambs as ‘cloned.’

“The only difference between these earlier cloned sheep and Dolly was that the first lambs were made asexually using cells taken from sheep embryos, while Dolly was made asexually from a cell taken from an adult ewe. But the cell nuclear transfer cloning process in both experiments was the same. Indeed, in their famous February 27, 1997, announcement of Dolly, Wilmut and his team stated that the ‘first offspring’ to be ‘born after nuclear transfer’ had been achieved previously.

“Why is this of interest? Because, the same line of experiments that culminated in the birth of Dolly is already well under way with primates. Which means human cloning is closer to reality than most people realize....”

The Weekly Standard – May 2, 2005

The paper, “Rhesus monkeys produced by nuclear transfer,” published in Biology of Reproduction Volume 57 (1997), is available free online (click on the “Full Text” link in the sidebar).

The new eugenics...weeding out the disabled...

Aborting the Disabled

by Rob Moll

A bill before the Senate hopes to better inform mothers about diagnosed disabilities, while a study confirms that women can feel pressured to terminate their pregnancy if tests find a disability.

“Women whose babies are prenatally diagnosed with Down syndrome report that ‘their obstetricians had failed to provide enough up-to-date printed material’ and ‘felt rushed or pressured into making a decision about continuing the pregnancy.’ The study of mothers whose children have Down syndrome was published in the American Journal of Obstetrics and Gynecology.

“One woman quoted in the study said that in 1999, when her child was diagnosed with Down syndrome, the doctor ‘showed a really pitiful video first of people with Down syndrome who were very low tone and lethargic-looking and then proceeded to tell us that our child would never be able to read, write, or count change.’

“In response, senators Sam Brownback and Ted Kennedy are sponsoring legislation that would require doctors to provide current medical information about any diagnosed disability after a prenatal test, along with treatment options, the expected development of the child, and information about local support communities.

Prenatal testing

“Testing babies while still in the womb is normally offered by doctors, and often recommended to women more than 35 or couples with other risk factors. Many states require doctors to offer prenatal genetic testing to all pregnant mothers. However, there are no treatment options for the genetic diseases tested for, such as cystic fibrosis, spina bifida, or Down syndrome.

“‘A lot of the testing is done for disease processes that we really can’t do anything about,’ says Stephen Nelson, staff neonatologist and director of the Neonatal Transport Service at MeritCare Children’s Hospital in Fargo, North Dakota. ‘Our ability to diagnose diseases prenatally exceeds our ability to treat....’

“The Brownback/Kennedy bill could help alleviate cultural pressure to abort. ‘The effect of this sort of “weeding out” is creating new eugenics, a form of systematic, disability-based discrimination,’ said Brownback. ‘We don’t want a world where parents feel driven to justify their children’s existence. We need to link parents with these programs so that they are equipped with all the information they need to hopefully make a life-affirming choice....’”

ChristianityToday.com – April 21, 2005

The study, “Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers” by Brian Skotko, published in the March issue of the American Journal of Obstetrics and Gynecology, is available at the website of the National Down Syndrome Congress.

A memo from Brian Skotko, summarizing his study “Prenatally diagnosed Down syndrome,” is also available at the National Down Syndrome Congress website.  Mr. Skotko is a joint-degree student at Harvard Medical School and Harvard’s John F. Kennedy School of Government.  He has a 24-year-old sister with Down syndrome and has co-authored the book, Common Threads: Celebrating Life with Down Syndrome.

Standing up for parents...standing up for life...

House Approves Bill Protecting Parental Involvement on Abortion

“The House of Representatives passed a bill on Wednesday protecting state statutes in more than two dozen states that requires abortion businesses to obtain either the consent or notification of a parent before performing an abortion on a teenage girl.

“The House passed the ‘Child Interstate Abortion Notification Act’ (H.R. 748) by a very strongly bipartisan 270-157 vote.

“About half of the states in the U.S. have either parental notification or consent laws, which have helped reduced teen abortions by as much as 30 percent. However, abortion advocates or others often taken minor teens across state lines to avoid such laws and ensure the teenager has an abortion without her parents’ knowledge or input.

“Florida Republican Rep Ileana Ros-Lehtinen’s legislation would make it a federal crime to take a minor teen to another state for abortions that violate her home state’s parental involvement laws....”

LifeNews.com – April 27, 2005

Five babies who have two mothers...

Surrogate Mother Has Quintuplets

Arizona woman gives birth to five boys, declines $15,000 fee

“First came Enrique, then Jorge a minute later. Gabriel came third. Then Javier and, finally, Victor.

“In the space of five minutes, surrogate mother Teresa Anderson delivered five boys to a childless couple she met on the Internet, a bond that grew so close she eventually waived the $15,000 fee she had charged.

“Luisa Gonzalez, 32, the children’s genetic mother, said she began to cry when the first of the quintuplets emerged. ‘I’ve been waiting for this for a long time,’ she said. ‘I cannot say enough about Teresa and what she’s done for us. She has given me my dream; she has given us our family.’

“Four of the boys should be able to go home in about three weeks. Javier will be hospitalized longer to undergo surgeries to correct a heart defect.

“The babies were born in the 33rd week of Anderson’s pregnancy, a week earlier than planned because the mother was experiencing elevated blood pressure and other complications. A full-term pregnancy is 40 weeks....

“Gabriel was the biggest, at 3 pounds, 15 ounces; Javier the smallest, at 3 pounds, 7 ounces. Enrique was 3 pounds, 14 ounces; Jorge 3 pounds, 13 ounces; and Victor 3 pounds, 8 ounces.

“Anderson, 25, had planned to use the $15,000 to help her study to be a nurse and support her own family. She and her husband have two children.

“But when the Andersons, of Mesa, discovered that all five embryos had taken hold, they decided to decline payment because of the expenses that Gonzalez, a homemaker, and her husband, Enrique Moreno, a landscaper, will now face....”

CNN.com – April 27, 2005

A possible advance for gene therapy...

Alzheimer’s Gene Therapy Slows Mental Decline

Not a Likely Cure, Say Researchers Testing Gene Therapy

“A new approach to Alzheimer’s disease uses gene therapy to slow down the disease.

“When tried for the first time in humans, the mental decline from Alzheimer’s slowed. Metabolic brain activity also increased, according to the report in Nature Medicine’s online edition.

“The study was very small, with only eight patients. More studies are needed, say the researchers, who included neurosciences professor Mark Tuszynski, MD, PhD, of the University of California, San Diego.

“The strategy didn’t cure Alzheimer’s disease and isn’t likely to do so, they caution. But if confirmed, it might be ‘a useful therapy’ that could surpass current Alzheimer’s treatments.

First Human Tests

“The technique is the first gene therapy for Alzheimer’s disease, according to a news release. Previously, it was tested on nonhuman primates.

“The participants—five women and three men with Alzheimer’s disease—were followed for nearly two years, on average.

“At the study’s start, participants were about 67 years old and were in the early stages of the disease. It had been about 4.5 years since their Alzheimer’s symptoms were first noticed and about two years since the probable diagnosis was made (Alzheimer’s is definitively diagnosed when the brain is examined after death).

“Each volunteer got mental tests and brain imaging scans before the procedure and at regular intervals during the two-year follow-up. That gave researchers a before-and-after look at participants’ progress....”

WebMD Medical News – April 25, 2005

Worth Considering...

I Want To Burden My Loved Ones

by Gilbert Meilaender

“It is...understandable that we sometimes chafe under these burdens [of caring for family]. If, however, we also go on to reject them, we cease to live in the kind of moral community that deserves to be called a family.  Here more than in any other sphere of life we are presented with unwanted and unexpected interruptions to our plans and projects.  I do not like such interruptions any more than the next person; indeed, a little less, I rather suspect.  But it is still true that morality consists in large part in learning to deal with the unwanted and unexpected interruptions to our plans.  I have tried, subject to my limits and weaknesses, to teach that lesson to my children.  Perhaps I will teach it best when I am a burden to them in my dying.

“...Perhaps it is a good thing, lest we be tempted to injustice, that the dying burden the living.  Some years ago Robert Burt wrote a book about medical decision-making for incompetent patients.  The book’s title was Taking Care of Strangers.  Burt’s point, which carried a double entendre, was essentially this:  Patients who are unable to make decisions for themselves are often in a state (e.g., severely demented, comatose) in which they become strangers to us.  They make us uneasy, and we react with ambivalence.  And to say, ‘I’ll take care of him’ about such a patient may be a statement freighted with ambivalence.  Burt worries that, no matter how devoted our care, our uneasiness with a loved one who has become a stranger to us may prompt us to do less than we ought to sustain his life. (Nor, should we note, are physicians immune to such uneasiness.)  It is, therefore, essential that we structure the medical decision-making situation in such a way that conversation is forced among the doctor, the medical caregivers, the patient’s family, and perhaps still others, such as pastor, priest, or rabbi.  Advance directives, designed to eliminate the need for such extended conversation—lest it should burden loved ones—are, from this perspective, somewhat problematic.  They may not force us to deal with our own ambivalence in ‘taking care of’ a loved one who is now a burdensome stranger.

“This does not mean that advance directives are entirely a bad idea.  It does suggest, however, that a durable power of attorney for medical care—in which we simply name a proxy to make decisions in the event of our incompetence—is better than a living will in which we attempt to state the kinds of treatment we would or would not desire under a variety of medical circumstances.  At this point in my life, for example, I would surely turn over to my wife my power of attorney.  In doing so I simply announce to medical caregivers:  ‘Here is the person with whom you must converse when the day comes that you cannot talk with me about my medical care.’  I myself do not particularly like the recently fashionable attempts to combine the two forms of advance directives by naming a proxy and giving that proxy as much detail as possible about what we would want done.  That move—though, again, it will be seen as an attempt to avoid burdening the loved one who must make such decisions—may not, in any case, accomplish our aim.  What it commits us to is an endless, futile search to determine what a now-incompetent person would wish.  Still more important, it is one last-ditch attempt to bypass the interdependence of human life, by which we simply do and should constitute a burden to those who love us.

“I hope, therefore, that I will have the good sense to empower my wife, while she is able, to make such decisions for me—though I know full well that we do not always agree about what is the best care in end-of-life circumstances.  That disagreement doesn’t bother me at all.  As long as she avoids the futile question, ‘What would he have wanted?’ and contents herself with the (difficult enough) question, ‘What is best for him now?’  I will have no quarrel with her.  Moreover, this approach is, I think, less likely to encourage her to make the moral mistake of asking, ‘Is his life a benefit to him (i.e., a life worth living)?’ and more likely to encourage her to ask, ‘What can we do to benefit the life he still has?’  No doubt this will be a burden to her.  No doubt she will bear the burden better than I would.  No doubt it will be only the last in a long history of burdens she has borne for me.  But then, mystery and continuous miracle that it is, she loves me.  And because she does, I must of course be a burden to her.”

Excerpted from “I Want to Burden My Loved Ones,” by Gilbert Meilaender, First Things, October 1991: 12–14.

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