Boudewijn Chabot: an unlikely critic of Dutch euthanasia practice?

Dr. Boudewijn Chabot is well-known as the doctor in the famous Dutch court case that effectively made psychiatric euthanasia legally permissible in that country.  He recently published an opinion piece which is highly critical of the recent trends in Dutch euthanasia practice involving persons with dementia and chronic psychiatric illnesses. You can find an English translation here.

In his article, Dr. Chabot targets several entities in making the main charge that the Dutch euthanasia’s laws which require certain conditions be met (such as unbearable suffering that has no prospect of improvement) are no longer functioning as intended due to toothless enforcement.

First, he is highly critical of the End of Life Clinic which now provides the majority of psychiatric euthanasias in that country.  This clinic’s mission is to provide euthanasia for those patients whose requests have been declined by their doctors.  It is a system of mobile clinics, affiliated with the country’s main right to die organization.

Second, he criticizes the Dutch euthanasia review committees for essentially rubber stamping approvals.

Third, he criticizes the researchers who conduct the federally mandated evaluation of the law’s impact every five years.  He essentially accuses them of whitewashing unacceptable practices, while claiming to uphold the criteria in the law.

“What is astonishing is that in the third evaluation of the law, the researchers still keep up the smoke screen around ‘unbearable suffering without prospect of improvement’.”

He ends with: “I don’t see how we can get the genie back in the bottle. It would already mean a lot if we’d acknowledge he’s out.”

What makes this essay unusual is that it is by a prominent Dutch figure in the history of the country’s development of euthanasia practice. Of course, similar concerns have been raised by numerous external critics.  (See for example, an article my colleague Trudo Lemmens and I wrote, raising concerns about the attempts to legalize psychiatric euthanasia in Canada.)

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5.4 Million Women, Craftivism, and Holding Space in Bioethics

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via my Instagram

Artist Chi Nguyen’s newest project, 5.4 Million and Counting, is a collective embroidery project that will result in a quilt that Nguyen is bringing to the Supreme Court on March 2nd (when the Supreme Court will hear Whole Woman’s Health v. Hellerstedt, a critical case on abortion access in Texas). The stitched tally marks represent the 5.4 million women of reproductive age in the state of Texas (although, not everyone who gets pregnant or needs abortion services identifies as a woman and not all women of reproductive age are at risk for unwanted pregnancies). She invites individuals to gather for stitch-ins or send in embroidered fabric to contribute to the project.  While stitching for the project, I found myself thinking about the people whose lives were being represented in these stitches and where bioethics and craft might meet.

Craft is a very literal way of taking matters into one’s own hands. It is learned and practiced in the body. It is a feeling more than it is a thought. While stitching the tally marks, I reflect on the care that each one requires. The physical act of pushing the needle through the fabric, pulling the loose thread, forming each stitch, is empowering. I feel like I am really doing and making something. I consider the feeling of making a medical decision, such as terminating a pregnancy, and the care and consideration it requires. I see this care and consideration first-hand. As an abortion doula, I support people through abortion procedures and create a nonjudgmental space for their experiences. I think about how these stitches create space for me to think the stories that have been shared with me. While the process is repetitive, the procedure performed similarly each time, they are all unique. It is somewhat obvious that people are different from one another and have different experiences, but it is nonetheless made tangibly clear to me through the stitches.

Craftivism, or using craft to further activist goals, has been a popular strategy for publicizing causes. One of the most well-known examples is the NAMES Project AIDS Memorial Quilt. The Quilt’s 3’x6’ panels, meant to represent the size of an average grave, honor those who have died of AIDS. It is the largest community art project in the world. The Quilt provided a way for people to mourn the losses of their loved ones. In the earlier days of the epidemic in the US, mourning a life lost to AIDS was complicated. Lovers and friends were forbidden to attend funerals by the deceased’s homophobic families. With formal mourning ceremonies closed off, the Quilt allowed people to find their own ways of celebrating the lives of their loved ones. While the panel sizes are standard, how people fill them varies with the diversity of people impacted by AIDS. The panels hold space for people’s lives and experiences.

Collaborative quilting has also found its way into bioethics. Muhjah Shakir, occupational therapist and bioethics scholar, directed a quilting project to explore the impact of the Tuskegee Syphilis Study. The Bioethics Quilt Project brought 15 African American women, aged 55 to 95, together to collaborate on a quilt and share their experiences. Shakir said, “I was inspired to do the quilt project because quilts tell stories, and it brought people together to talk about a difficult subject and the women who have been left out of the dialogue of the Study.” The quilt brought together the Study’s legacy and the community. It provided an opportunity for women, who were not enrolled in the study, to express how the research impacted them and their communities.

The idea of “holding space” is a nonjudgmental process of walking alongside and supporting someone while they move through whatever they’re moving through. It may involve giving guidance, but may also involve allowing people the space to make their own choices and come to conclusions in their own time. Holding space for people empowers them to take decisions into their own hands. It can be empowering to be able to make a decision in a supportive environment. Many discussions in bioethics involve performing ethical analysis and making recommendations, but I think bioethicists have a critical role to play in holding space for clinicians, participants, researchers, patients, and others to grapple with ethical dilemmas and make choices that they can justify. As a crafter, I use craft to hold space for me and my thoughts and feelings and experiences. As a doula, I hold space for people seeking abortions to feel and exist without judgment and to feel empowered and in control while medical professionals perform their procedures. As a bioethicist, I hope to hold space for people to grapple with ethics in their lives and practices and come to decisions that they can own as their own.

Ethics of meat… and fruits and vegetables too

There’s no need to rehearse the deplorable practice of large scale factory farming of animals for consumption.  It is widely reported and widely condemned, although most of us continue to buy and consume meat produced this way.

Because of the additional negative aspects of meat consumption (bad for the consumer’s health; bad for the environment), the practice has received considerable attention.  What has received perhaps less attention (although I think this is not news for those of us who grew up in rural Midwest seeing migrant farmers laboring in the fields) is the ethics of how vegetables and fruit are grown.

Take the case of Mexico. The US imports about $10 billion/yr worth of fruits and vegetables from Mexico, by the far the single biggest supplier of such products to US consumers. They supply stores ranging from the humble (Walmart) to the upscale (WholeFoods).

In 2014, LA Times published a series of articles exposing the conditions under which such products are grown.  Most farm workers in Mexico are indigenous peoples who are shipped in for seasonal work.  They found:

  • Many farm laborers are trapped for months in rat-infested camps, without beds and without facilities for hygiene.
  • Some camp bosses illegally withhold wages to hold workers hostage
  • Laborers often go deep in debt paying inflated prices at company stores and ironically have to scavenge for food.
  • Those live in camps with barbed-wire fences.
  • Major U.S. companies have done little to enforce guidelines that are routinely violated.

The article notes the contrast between how well the products are treated (with literally tender loving care, lest they be blemished for the US market) and how the workers are treated.  One poignant, and rather symbolic, quote:

“They want us to take such great care of the tomatoes, but they don’t take care of us,” said Japolina Jaimez, a field hand at Rene Produce, a grower of tomatoes, peppers and cucumbers in the northwestern state of Sinaloa. “Look at how we live.”

How should one respond to injustices from which one benefits?  There are many issues here and I won’t pretend that I am addressing the most important when I ask:  Does it create obligations in terms of one’s own eating habits?  What kind of obligations exist? What priority do they have, compared to other obligations?

 

 

Euthanasia and assisted suicide of persons with psychiatric disorders

Although the original debates over legalization of assisted death (euthanasia or assisted suicide, or EAS) focused on the terminally ill, in some countries the practice has expanded to non-terminally ill patients, such as patients suffering from psychiatric disorders.

We recently studied 66 cases of psychiatric EAS from the Netherlands.  We examined the patients’ various psychiatric, medical, and social conditions; their histories (including treatment history, suicide attempts, treatment refusals); the physicians’ evaluation of the patients; and how the euthanasia review committees retrospectively reviewed the cases.

The study provides a relatively fine-grained, individual level picture of what is happening when patients suffering from psychiatric disorders are euthanised or given lethal doses of medications for ingestion under the Dutch system.  This is in contrast to the usual large scale population surveys connecting death registry data to physician self-reports that cannot tell us much about the practice of EAS at the individual level.

You can read the article for free here.  Paul Appelbaum has written an excellent editorial on the study.  You can also read coverage by New York Times and Reuters.  This issue is very much a live topic in Canada because their Parliament is currently debating how to regulate physician assisted death.  You can read a Canadian perspective on our study here.

What are the main findings?  You can of course read the paper for the numbers and the methods. But here I draw out some implications and themes.

My first surprise in doing this study was that despite the fact that the Dutch euthanasia committees (RTE) have been making anonymized case summaries of EAS patients public for years, no one (as far as we can tell) has published an in depth analysis using those documents.  I think that is significant.

The biggest surprise was that people who received EAS didn’t match the usual picture of the paradigm case of psychiatric EAS.  The debates over psychiatric EAS tend to focus on a particular picture: A patient with long history of severe treatment resistant depression who, after insightful assessment of her situation, exercises her autonomy to choose death and she receives euthanasia surrounded by a family who supports her.

But the reality is a bit more complicated.

First, there is a wide range of psychiatric conditions represented. 26% had some form of psychosis, for instance—some of them lifelong schizophrenia. Others had cognitive impairment.  There were cases of autism spectrum disorder, eating disorders, as well as an otherwise healthy woman who received EAS from ‘prolonged grief’ over her husband’s death a year prior to her EAS.

Second, in a majority of cases, what was notable in these patients was not their psychiatric conditions per se (for a psychiatrist, the patients will seem familiar) but that they tended to be persons who have reduced ability to cope—i.e., people with personality difficulties, social isolation, or feelings of loneliness.  One disappointing aspect of the reports we read was that they generally did not provide clear explanations about why a request for EAS by such patients is a rational, autonomous act rather than an act driven by psychopathology.  That is, the distinction is repeatedly invoked, but there is no further explanation than the pronouncement of the physicians.  For example, most patients had suicide attempt histories and some even attempted suicide during the clinical episode that led to their EAS. I had expected to see the physicians’ explanations for distinguishing between ‘suicidal due to a psychiatric condition’ and more ‘rational’ suicide to be more substantial than was contained in the reports.

Third, another notable finding is that the Dutch practice of psychiatric EAS seems to be more liberal than the practice Guidelines promulgated by the main Dutch psychiatric organization (which is in fact rather supportive of the practice).  For example, the actual practice (with approval by the review committee) does not have to involve any truly independent psychiatric input. But the psychiatric society’s Guidelines recommend not only an independent psychiatrist in each case but a subspecialist who is an expert on the disorder (for example, an eating disorder specialist).  That is an interesting discrepancy between the views of the Dutch psychiatric profession and how the laws are implemented.

In fact, given that the Dutch euthanasia committees generally do not have psychiatrists (or at least not until recently), it appears that the following is possible (and indeed occurs): a psychiatric patient could be euthanized without any independent expert input or oversight, and then the official review of the completed EAS is conducted with no psychiatric expert input.  That is a lot of trust in the judgment of the treating psychiatrist, or even a general practitioner.

Fourth, the Dutch system relies tremendously on physician judgment to implement fairly broad and vague rules and this is very problematic for psychiatric cases, even when experts are involved.

Now, for most terminal illnesses, we can be fairly sure what the eventual outcome for the patient is.  There’s not a lot of physician discretion involved in most situations.

But for psychiatric conditions, physicians must make tricky clinical determinations (for example, when patients refuse psychiatric treatment and instead want EAS, how should the doctor proceed?) without the help of a robust evidence base.  There is no evidence base to operationalize “unbearable suffering.” There are no prospective studies of decision-making capacity in persons seeking EAS for psychiatric reasons. And the prognosis of patients labeled as ‘treatment-resistant depression’ varies considerably, depending on the population and the kind of treatments they receive. We provide references to these points in the paper.

Thus, we found that many patients had been previously denied EAS, and even when it is granted, not infrequently there is disagreement among physicians as to whether the legal criteria (“unbearable suffering,” “hopeless” prospects, “voluntary and well-considered request,” among others) are met for EAS.  Most of the time the disagreement is not resolved before the person receives EAS–as that is not required by law (this point is presumed to be so well understood that the euthanasia review committees usually do not even comment on the disagreement). And those who are refused EAS eventually find doctors and consultants who see things differently–usually at a mobile End of Life Clinic whose sole purpose is to provide EAS.

Finally, we note in the paper–as does the editorialist Paul Appelbaum–various limitations to our study. Primarily, they are related to the nature of the source documents: case summaries drafted by the euthanasia review committees using the written reports (and rarely oral testimony) of the physicians involved.  They are not detailed medical notes, and they are certainly a form of ‘self-report’ since the physicians are describing how they complied with the law.  The limitations of such source documents should be obvious. Two observations are worth making on this. First, even with such limitations, it was not difficult to find rather concerning features of the cases (a testament to the integrity and transparency of the Dutch euthanasia committee). So despite the limitations, our study provides the most systematic and rich description of the practice of psychiatric EAS to date.  Second, to the extent that one might be tempted to discount our findings, one should realize the implication of such an assertion: despite decades of this controversial practice, there seems to be so little data to reassure us that all is well.

Alcohol, Pregnancy, and Evidence

This week, the Centers for Disease Control released new guidance on alcohol consumption during pregnancy. Ultimately, the CDC is attempting to mitigate the negative effects of drinking during the first trimester by people who do not yet know they are pregnant. What they did, however, was advise all women of reproductive age to either be on birth control or not be drinking. This rests on the assumptions that women who are drinking are definitely having unprotected heterosexual sex, which will definitely result in a pregnancy and that abortion is so unthinkable it need not even be mentioned. In this framework, any woman not on birth control might become pregnant, so she should act as if she already is. Women of reproductive age can be considered to be pre-pregnant.

On the one hand, these recommendations seem well-intentioned. Women are largely the ones who get pregnant and have the fetus inside of them (although let’s not pretend that everyone who gets pregnant identifies as a woman). Their body and what they consume determines the environment in which the fetus develops. People also generally don’t immediately know that they are pregnant, so they may be drinking while pregnant and not realize it, inadvertently harming the fetus. 

Yet, the link between alcohol consumption and fetal harm is still pretty nebulous. Research on Fetal Alcohol Spectrum Disorders (FASD) is limited and seems at disconnected from professional guidance. While professional organizations tend to side with the message that there is no safe amount of alcohol to drink during pregnancy, research studies on drinking during pregnancy tell a mixed story. Binge drinking is generally not a good idea and is probably a worse idea during pregnancy. Studies dating back to the 1990s have found heavy drinking is associated with preterm birth, low birth weight, and later cognitive development issues. But consuming moderate amounts of alcohol during pregnancy might not be the end of the world. Having one drink a day or less seems to have little or no effect on fetal outcomes. A meta-analysis of over 130,000 pregnancy outcomes also found no association with moderate drinking (2 or more drinks per week but 2 or fewer drinks per day) and fetal malformations, even during the first semester. 

These recommendations also ignore a key player in pregnancy: sperm. The shift from pre-pregnant to pregnant requires another party. Sperm matter. Studies in mice did find an association between paternal alcohol consumption prior to conception and fetal abnormalities. There’s some data that paternal alcohol consumption matters in people as well. A study looking at early pregnancy loss find that the pregnant person’s alcohol consumption increased the risk of pregnancy loss 2-3 times while the sperm provider’s alcohol consumption increased the risk of pregnancy loss by 2-5 times. By focusing solely on women, the CDC guidelines also ignore data that men binge drink more than women and are more likely to be violent when they drink. Pregnant people are also at a higher risk for intimate partner violence. Yet we do not tell men not to drink while their partner is pregnant out of fear that they will abuse their partner and harm the fetus.

While there are no known safe levels of alcohol during pregnancy, there are also no known safe levels of caffeine or Tylenol or the range of drugs we don’t know about because pregnant women are regularly excluded from research.The data people need to make decisions about risk in their pregnancy don’t exist, because the research hasn’t been done. It is unclear that the evidence against alcohol is any stronger than the evidence against any of the other things pregnant people consume in moderation. It would seem ridiculous to suggest that pre-pregnant people avoid drinking coffee over concerns about a possible pregnancy but there seems to be something moralistic around condemning alcohol consumption.

On a more theoretical level, these recommendations frame anyone who can get pregnant as someone who may already be pregnant. The idea that women of reproductive age are either pregnant or “pre-pregnant” is concerning. For people who are actually pregnant and hoping to carry the pregnancy to term, there is a real tension between the choices of the pregnant person and the consequences for the fetus. We have lots of rules that dictate how the law should balance the interests of the pregnant person with the fetus (spoiler alert: they usually side with the fetus). If we extend this to pre-pregnant people, we could end up deeming a lot of behaviors impermissible for women based on a fetus that doesn’t yet exist. It is one thing to value the life of a fetus over certain choices a mother might make, it is another thing entirely to value the potential life of a fetus that may be conceived and may be viable and may be carried to term over choices that a woman might make. Promoting healthy pregnancies is important, but it is not worth restricting the choices of all women of reproductive in order to protect fetuses that do not yet exist.

Waiving the requirement for informed consent?

When is it permissible to waive or alter the usual rules of informed consent in human subjects research?  It is a testament to the success of the modern system of regulating research with humans that such a question will seem odd, even disturbing, to many.  Isn’t informed consent always necessary?

Actually, our current regulations do allow waivers and alterations of informed consent but it is important to know what this means.  It means waiver or alteration of the specific regulatory requirements, rather than of the general ethical requirement itself.  And such waivers or alterations must meet strict criteria. The regulations state that:

An IRB may approve a consent procedure which does not include, or which alters, some or all of the elements of informed consent set forth in this section, or waive the requirements to obtain informed consent provided the IRB finds and documents that:

 (1) The research involves no more than minimal risk to the subjects;

 (2) The waiver or alteration will not adversely affect the rights and welfare of the subjects;

 (3) The research could not practicably be carried out without the waiver or alteration; and

 (4) Whenever appropriate, the subjects will be provided with additional pertinent information after participation.

Until recently, there has been relatively little discussion about how to apply these criteria. Perhaps this is because most of the time the waivers were used for medical records research which most people do not either know about or would agree to anyway. But with the increasing interest in comparative effectiveness research, there has been a steady rise in calls for allowing waivers in settings that have not usually seen such waivers, namely, randomized clinical trials.

My colleague Frank Miller and I have been somewhat skeptical of this trend.  We just published a new paper on this topic.  In it, we use the principle of respect for persons as a way interpreting these criteria for waiver or alteration of informed consent.

JAMA special issue on end of life

Last week’s JAMA has several articles and an editorial on various issues in end-of-life care, including assisted suicide/dying and euthanasia.  Here’s the editors’ summary of the issue.  There are excellent articles for and against assisted suicide, a commentary by a prominent Canadian doctor on recent events in Canada, a masterful summary of key end-of-life care issues by Atul Gawande (free to anyone), among others.  The issue addresses not just the assisted death controversy but puts it in a broader context of what it’s like to die in modern society, and factors that so sadly work against helping people achieve a good death in these modern health care systems.