New guidelines for euthanasia in the Netherlands

As I was doing some research on the issue of physician assisted suicide and patient requests for death, I came across a news headline titled “Euthanasia Rules Relaxed for People with Serious Dementia.” Intrigued, I followed the link to learn that the Netherlands are now allowing for aid in dying to occur when severely demented patients have a written euthanasia request. From my understanding, this document serves as a type of advance directive instructing physicians regarding euthanizing the patient once the dementia has progressed to a point where the patient would no longer be considered competent to make the request. The directive is to be written while the patient still retains competence.

I find this new “progression” of the euthanasia guidelines to be cause for concern on multiple points, even beyond my general objections to euthanasia:
– First, I’d like to learn more about the specifics of these guidelines, such as whether or not the written request for euthanasia is binding at law. If it is binding, it holds patients to a decision they make before they understood what living with the condition is like. There is always a possibility that what one thinks will be an intolerable condition of living, may not be as they supposed. Death is irreversible and moving forward with instruction to euthanize a patient is highly concerning, especially when at the time of the action the patient is not requesting death nor able to consent.
– Second, I’m concerned that the guideline change seems to focus on a group that should be granted extra protection legally, and allows for their destruction instead.
– Third, I’m concerned with the rights of Dutch physicians to be able to refuse to participate in this, and any, act of euthanizing a patient. There has been a call for the Netherlands to grant this allowance to physicians, and as the boundaries of euthanasia practice extends, as evidenced in the new guidelines, I think the importance of this recognition becomes even more imperative.

The concerns listed are not all-encompassing, but do highlight some of the issues that stood out to me regarding the Netherlands’ newest guidelines for allowing and extending the practice of euthanasia.

A Season of Advent

During this season of Advent, I have been participating in a Bible study where we are studying and considering the first first two chapters of Luke. Yesterday’s reading from Luke 1 really struck me in a way it had not before, and I thought I would share my thoughts for this weeks post. The passage from Luke is included below:

Luke 1:39-55 (ESV):
39 In those days Mary arose and went with haste into the hill country, to a town in Judah, 40 and she entered the house of Zechariah and greeted Elizabeth. 41 And when Elizabeth heard the greeting of Mary, the baby leaped in her womb. And Elizabeth was filled with the Holy Spirit, 42 and she exclaimed with a loud cry, “Blessed are you among women, and blessed is the fruit of your womb! 43 And why is this granted to me that the mother of my Lord should come to me? 44 For behold, when the sound of your greeting came to my ears, the baby in my womb leaped for joy. 45 And blessed is she who believed that there would be7 a fulfillment of what was spoken to her from the Lord.”
46 And Mary said,
“My soul magnifies the Lord,
47 and my spirit rejoices in God my Savior,
48 for he has looked on the humble estate of his servant.
For behold, from now on all generations will call me blessed;
49 for he who is mighty has done great things for me,
and holy is his name.
50 And his mercy is for those who fear him
from generation to generation.
51 He has shown strength with his arm;
he has scattered the proud in the thoughts of their hearts;
52 he has brought down the mighty from their thrones
land exalted those of humble estate;
53 he has filled the hungry with good things,
and the rich he has sent away empty.
54 He has helped phis servant Israel,
in remembrance of his mercy,
55 as he spoke to our fathers,
to Abraham and to his offspring forever.”

I cannot help but think what a beautiful illustration this is of God placing a call on each of our lives – even at the stage of fetal development. How beautiful that even as unborn child, John responds to the presence of his Savior, Jesus, who was also an unborn child. How beautiful the joy experienced by their mothers Elizabeth and Mary. How beautiful that God revealed himself to us! We hear the story of the birth of Jesus often this time of year, but what a wonderful thing to think how even as prior to his birth Jesus was fulfilling the promises of God.

As you continue through this season of Advent, I want to encourage you to respond to the presence of your Savior with joy, recognizing that his wonderful gift of hope and salvation began not just as a baby, but as an unborn child in Mary’s womb.

A Cautionary Reminder

I recently had the opportunity to give a guest lecture on the topic of eugenics. As I was reading and preparing for the talk, I was struck with the thought of how quickly it is we forget our past, especially when it is unattractive. When we think of the topic of eugenics, many of us almost instinctively think of Nazi Germany – and rightfully so – as approximately 400,000 forced sterilizations took place as a part of eugenic practices. However, we need to remember our own past, as well, where in over 30 states we enforced eugenic sterilization laws leading to 65,000 people being forcibly sterilized between 1907 and 1974. The reasons for these forced sterilizations in the U.S. were many, but predominantly reflect devaluation of individuals who were poor and institutionalized.

The goal of the eugenics movement sounded benign enough, and perhaps even altruistic: to better human welfare and reduce infant mortality, yet it resulted in a dark reality. People were classified and valued based on their intelligence, their physical characteristics, their genealogy, and based on their social value. This valuation was promoted in popular culture and enforced at law (read the case of Buck v. Bell, for an example). I want to remind us of this not to point out how far we’ve come, or to lay blame in the past, but as a cautionary reminder. Discrimination based on race, class, appearance, etc., still exists. Although we no longer have eugenics based forcible sterilization laws in place as we did in the past, discrimination and valuation of other human beings is still very real. As we practice our professions and interact with others on a daily basis, may we be mindful of this and act treating everyone with respect and recognizing their inherent value as a child of God.

Conversations Regarding End of Life Decisions

Talking about end of life decisions and death can be uncomfortable. Talking about death and end of life care decisions with the ones we are closest to can be paralyzing. Maybe the difficulty comes from the desire to avoid any thoughts of losing the ones we love. Perhaps it is an expression of denying the reality of death. Even though death is a reality everyone faces, we often avoid it in our conversations. When we do discuss it, is often at time when its presence is looming. At this point, the conversation surrounding end of life decisions is often taking place when stress is high, exhaustion is unavoidable, and emotions responding in full force. While we should have these conversations with the ones we love, the timing can greatly impact the way we leave it.  These conversations are best had often, and not limited to what feels like desperate situations.

The conversations will vary, but the following are some things I think are worth consideration and discussion when thinking about making end of life decisions:
– Discuss what type of health care intervention you and your loved ones would want, or not want.
– Talk about palliative care.
– Discuss what you would consider ordinary care versus extraordinary care.
– Try to understand the personal values held by one another. Don’t shy away from ethical concerns and if you are troubled by something discuss it earlier rather than later when a decision must be made.
– Talk about your spiritual state with one another.

These conversations can be difficult, but they are important. The necessity of these conversations has recently become a reality in my family. A loved one is facing the end of their time on earth, and difficult decisions are being made. These types of situations have the power to bring a family together or tear them a part. I encourage you to be in the first category. I’m sharing some ways I have observed that are conducive to handling it well:
– Communicate well and often with one another.
– Make decisions together, and be humble in your approach.
– Be forgiving of one another; high stress situations have the tendency to bring out hurt we’ve been holding on to and unresolved issues, respond in love to one another and forgive the hurt you may be holding.

Neither of the above lists are exhaustive, but a reflection of what I have seen as valuable in my own experience. I share this in the hope that others will be encouraged to talk with their families about end of life decisions. Ask hard questions and listen to the answers. Respond in grace to one another. And most importantly, always be mindful of the redemption Christ offers – He overcame death so we do not have to.

Considering best care for extremely premature babies

A couple of weeks ago I was invited to attend a lecture given by Dr. Mark Mercurio of Yale University on making ethical decisions regarding the treatment of neonatal babies. Dr. Mercurio’s talk focused on the topic of aggressive treatment of extremely premature infants (22 – 25 week gestational age). Although I have devoted much of my time to researching beginning of life issues (predominantly issues focusing on the baby in-utero and the mother), I have only recently started focusing my attention more on ethical issues regarding neonatal topics. Dr. Mercurio’s presentation was extremely thoughtful and brought up some interesting and practical points for consideration; I thought I would share three that stood out to me with all of you this week.

1. Whether treatment is impermissible, permissible, or obligatory should be determined by two factors: prognosis and feasibility.

I appreciated this point because it recognizes that treatment needs to be both appropriate and actually possible. It is important to remember that the baby is the patient, and what is done in the form of treatment should be just that: treatment. Experimentation should not be presented as treatment if it is not known to actually provide treatment to the patient. While there is a time and place for developing experimental treatments, this must be presented as experimental and monitored closely to avoid any unethical conduct, any illegal conduct, or any harm to the patient.

2. Gestational age should not be the only factor used to decide whether or not to treat a premature infant.

Although gestational age seems like a decisive line to use to determine treatment, it is not the best indicator of how a baby will respond. Dr. Mercurio pointed out that although people often speak in definite terms regarding gestational age, it is really more a range with a give-or-take of two weeks from stated gestational age. So for example, a baby thought to be born at 23 weeks, could actually be closer to 25 weeks old. Furthermore, age is not the only factor known to impact a baby’s chances of survival. Gender and birthweight, amongst other things, both are also factors.

3. When determining whether or not treat a premature baby, Dr. Mercurio said the relevant question should be “What are the chances… for this child IF WE TRY?”

Basically, this point comes to not looking at the baby as a statistic, but as an individual that we should consider as such. This requires an honest and thoughtful consideration of each baby born extremely prematurely, both as they are, and as they could be with appropriate treatment given.  Success increases if we try.  And while aggressive treatment may not always be the best option for care, we should always consider what the potential success will be when we try before making that decision.

Every baby is valuable and deserving of the best possible care. I thought Dr. Mercurio brought up some good points for consideration about when pursuing aggressive treatment for babies born extremely prematurely is the best care and when it is not. We must consider each baby individually, and seek to offer the best possible care in every situation.

Opting out of informed consent?

In the process of conducting research for a project, I have recently encountered “opt-out” provisions in two separate contexts: medical research and organ donation. An opt-out provision presents a situation where consent is assumed, and in order to not participate in the research/procedure/donation an individual must take active steps to refuse consent. This stands in stark contrast with informed consent where before any type of procedure is done, the patient (or donor/donor’s next of kin) must affirmatively agree to any type of procedure being done to him/her. The National Institutes of Heath defines informed consent to mean “You are informed: you have received information about your health condition and treatment options. You understand your health condition and treatment options.You are able to decide what health care treatment you want to receive and give your consent to receive it.”(see here). Informed consent is the standard in the United States for both research and treatment. Beyond being just an example of the value placed on autonomy in the United States, it is our response to past harms and proactive approach to prevent exploitations of people in the future (think of the Tuskegee experience, for example).

So why are opt-out provisions even being considered? In both of the spaces where I have seen opt-out provisions being implemented (see this article) or proposed (see this article regarding a bill in Vermont), the commonality seems to be an extreme need and not enough resources to meet it. However, despite the extreme need, I believe we can come up with solutions that are not at the expense of informed consent.

I believe we need to be very cautious about adopting opt-out provisions. While I understand the need to find a creative approach to meet a need where there is a major lack of resources, I think that opt-out provisions present many other, and potentially more serious, concerns. What are your thoughts on opt-out provisions? Can you think of situation where they have been used in an ethical manner? Can you think of other creative approaches to dealing with meeting a lack of resources that maintains the standard of informed consent? I’m interested to learn more about your interactions with consent in an opt-out format.

An Unexpected Reminder

This weekend I went to see the movie “Tomorrowland” with my husband. I should admit now that I am a Disney aficionado and was perhaps overly excited to escape to this children’s movie based on the theme park for a couple of hours. Without giving away the plot line, this movie primarily took place in a modern doomsday setting – with many of the “current events” portrayed clearly paralleling the stories on our news channels. Tomorrowland demonstrated, on a basic level, how technology can be used to do both immense good and immense harm. The movie shows that even technology created for what seems to be a good or noble purpose may be distorted and not always be used in the way it was intended. Why you create matters, but what you do with what you create matters even more. Yet despite its doomsday atmosphere, woven throughout the movie was a message of the power of imagination and creating a better future. The movie focused on the idea that the freedom to imagine and create must be encouraged. Most striking to me, however, was the unexpected reminder I had when one of the characters asks in the midst of discussing all the earth’s tragedies (like the realization of what was written as fiction in “A Brave New World” ), “But what are we going to do about it?”

This simple question from this children’s movie has led me to think quite seriously about my response: what am I going to do about it? It served as a reminder that I can do something about the tragedies happening in the world around me and even in my own community. I especially could not help thinking of this in terms of bioethics as so many of the new technologies we discuss have both the power to do both great good and great harm. What will my response be? I must make a decision to act, through the grace of God, and reject complacency.   Through the grace of God, I can speak truth into the situations which I may face. Through the grace of God, I can take a stand to protect the vulnerable. Through the grace of God, I can advocate for policies that affirm life at all stages. Through the grace of God, I can walk through an illness with someone and offer true peace.

During this movie, I was reminded, and strangely encouraged, to not just think about the issues of bioethics, pondering them in my mind (as I sometimes to do), but to take the next step and work to make a difference.  So this week, I encourage each of you as you are faced with a situation that seems hopeless, ask yourself, “But what are we going to do about it?” and then, through the grace of God, do something.

Reflecting on “The Abolition of Man”

Continuing the discussion I started last week, and which was thoughtfully furthered by Jon on April 30, I decided to share a brief passage from C.S. Lewis’ book The Abolition of Man (as referenced by Jon, as well) for my post today. I first read The Abolition of Man during college, and was struck by how powerful this short book was. Since then I have found myself returning to it many times. In the book, Lewis addresses the human condition and what the result is when we make values subjective and deny the truths that have long been recognized by human beings (the “Tao” as he refers to it). Lewis articulately demonstrates that in seeking to overcome and conquer the human condition through such rejection of any system of values, in the end what we are really doing is destroying ourselves. Put another way, that in conquering human nature, we ultimately defeat ourselves.

“The final stage is come when Man by eugenics, by pre-natal condition, and by an education and propaganda based on a perfect applied psychology, has obtained full control over himself. Human nature will be the last part of Nature to surrender to man. The battle will then be won. We shall have ‘taken the thread of life out of the hand of Clotho’ and be henceforth free to make our species whatever we wish it to be. The battle will indeed be won. But who, precisely, will have won it?”

I share this not to point out the decline of humanity in a dramatic or fatalistic reaction, but to encourage us to remember the importance of offering sound, ethical advice in the midst of ever-advancing human knowledge. To remind us that in seeking to heal humanity of hurt and disease, we don’t seek to conquer humanity, defeating ourselves in the process.

Editing Genes

The idea of “designer babies” is not an uncommon discussion topic in bioethics communities or pop-culture. From its depiction in “classic” bioethics ethics movies like GATTACA, to current medical practices, like allowing for selective implantation of IVF created embryos, the idea of choosing our children has moved from science fiction to being realized as an actual possibility.

As I was reading the news yesterday, I came across an article that highlighted a new technic being tested in China that would take this to a whole new level. The study being highlighted is one where Chinese scientists are using a technic to “edit” human genes through a process known as “Crispr” to modify human DNA. There are so many ethical concerns regarding this research experiment and it’s potential application, that to address all of them would far exceed the limits of a blog post. However, I do want to raise some of my broader concerns for consideration with the advent of this experiment.

First, I am concerned about the very nature of the experiment. Eighty-five (85) human embryos were tested on with no intention of allowing them to fully develop. Experimenting on human lives at the earliest stages with the intent to destroy them, or to prevent them from developing, poses a major ethical problem. It regards human life as disposable by allowing for its destruction at the earliest stages of development. Additionally, the article also refers to the embryos tested as being deemed “defective” (please note defective was not defined). As I discussed in my post on April 13, 2015, discrimination due to a perceived “defect” is highly problematic. Here, the embryos were deemed acceptable to experiment on due to having some sort of “defect.” Their worth was deemed disposable.

Second, I am concerned with the goal of the experiment seeking to alter the human condition.
Although the initial goal seems worthy – to replace genetic markers for disease – the science is complex and not without consequence. If and when the scientific technics for this process are figured out, it will no doubt will be applied for purposes other than healing. Using the example of Huntington’s disease, the article also points out that the process itself presents ethical concerns as the “editing” must begin immediately, leaving no time to test to see if the embryo actually contains the genetic mutation before altering it. This means that the process could be applied to a “healthy” embryo, exposing it to unnecessary risks.

Finally, I am concerned about the unintended consequences of the experiment, should its goals be realized. By altering the DNA, the “edits” made will impact not only the individual, but all of his/her descendants, as well. This means that the risks presented are not limited to the embryonic person, but extend infinitely to all of his/her future descendants.

As I mentioned, these are only a few of the concerns that come from this experiment. I encourage you to read the article and consider the other ethical implications that will arise from editing human genes.

(anti)Discrimination Starts in the Womb

During law school I had the opportunity to take many courses related to health law, including a class on disability law, as well as a class that discussed emerging medical technologies. Though these classes were taught by different professors, and focused on different issues, in each class the theme of discrimination was present. At some point in each respective class, the topic of discrimination based on the prenatal diagnosis of a disability was discussed. The professors were addressing the struggle that exists between trying to simultaneously uphold anti-discrimination policies, while also supporting a woman’s legal right to choose an abortion. They recognized the staggering statistics that represent the number of children aborted upon a diagnoses of Down Syndrome as discriminatory towards people with this particular developmental disability, but were trepidatious about promoting policies that could diminish a woman’s legal right to an abortion. My former professors are intelligent, thoughtful and engaged individuals who recognized the discrimination, but were not willing to promote policies that would prohibit it.

As a pro-life woman, I was relieved that this recognition of discrimination against pre-born people with disabilities was being recognized as a problem, but also frustrated that policies promoting this type of discrimination were not being encouraged in the academic setting (at least in my law school experience). The perceived need for a right to abortion is so strong, and so engrained in our culture, that blatant discrimination is tolerated in order to uphold abortion rights. According to the Charlotte Lozier Institute, 61-93% of children diagnosed prenatally to have Down Syndrome are aborted. Unfortunately, we often see disabilities as a problem, rather than a difference, and abortion is presented as a way to avoid the “problem.”

As a society, our attitude and actions towards people with disabilities needs to change. We need to treat each person, not as problem, but as fully human in action and in law. To date, only one state, North Dakota, has instituted an anti-discrimination law prohibiting abortion based on the diagnosis of Down Syndrome, although Ohio recently proposed legislation that would have the same effect, as well, should it become law (see here).  Laws such as these are an important step in protecting people with disabilities, that will hopefully also impact societal perceptions. I believe if we are truly seeking to stop discrimination against people with disabilities and eliminate stigmatizations about them, it must start in the womb.