The is currently a legal (and ethical) debate in Texas over the treatment of a one-year-old infant, Tinslee Lewis (see articles in the Hastings Center Bioethics Forum and the Fort Worth Star-Telegram). Tinslee was born prematurely with a congenital heart defect and subsequent severe lung disease. She has had multiple surgeries and is on a ventilator in ICU. In October Cook Children’s Hospital, physicians, and ethics committee made a decision to remove her from the ventilator in spite of her mother’s desire to have the ventilator continued. This was done in accord with Texas law which allows a hospital to stop life-sustaining treatment of a child against the wishes of the child’s parents if the treatment is futile. Tinslee’s mother went to court and obtained an injunction to keep the hospital from withdrawing the treatment. In January the court decided in favor of the hospital that the treatment could be withdrawn, but that decision was appealed and is now being heard in a Court of Appeals. There are two issues at stake. One is who should be the final decision-making authority for Tinslee. The other is whether the current Texas law is constitutional.
The hospital says that treating Tinslee with the ventilator is causing suffering without medical benefit and that her physicians have a right to decline to participate in such treatment. They support the current Texas law which would allow the hospital to stop the treatment. Tinslee’s mother says that her daughter is not suffering and has actually recently improved. Her lawyers say that the current Texas law is unconstitutional. The two sides have been joined by interesting supporters. The hospital has been joined by the Texas Catholic Conference of Bishops and several other groups including a pro-life group and a disability rights group who argue that the current law provides protection for patients and protects rights of conscience for physicians. Tinslee’s mother has been joined by the Texas Solicitor General and the Texas Attorney General who are seeking to overturn the current Texas law.
The basic ethical question is whether rights of conscience apply in this situation. The physicians and hospital say that they believe that continuing the ventilator is wrong because it is causing suffering without medical benefit and they should be able to refuse to provide a treatment they believe to be wrong because of a right of conscience.
I think that rights of conscience for physicians and other medical providers are very important. However, there is a significant moral difference between the usual understanding of rights of conscience in which physicians refuse to engage in actions they believe to be inherently morally wrong. A physician who refuses to be involved in abortion or euthanasia does so because he or she believes that such actions are inherently wrong. The physicians in this case do not believe that treating an infant with a ventilator is an inherently wrong action. It is quite likely that these same physicians recommended the use of the ventilator and encouraged Tinslee’s mother to see this a treatment that was good for Tinslee and which they could make as painless and comfortable for her as possible. The decision to stop the treatment which they once recommended is a judgment based on their values that the burden of the treatment has become more than the benefit of the treatment. That is significantly different from a refusal to participate in a treatment which the physician believes to be inherently wrong. The burden of being on the ventilator is no different than it was when it was started. The ventilator continues to be effective in performing its function of supporting respiration. What has changed in the physicians’ minds is whether the benefit of extending this child’s life is worthwhile. That is a decision that should be made based on the values of her mother, not the values of the physicians.
In ethics it is very important to communicate with clearly
defined terms. This becomes especially important when dealing with a very
divisive topic such as abortion. Fifty years ago, in the ethical debates about
abortion, some expressed concern about how the term human being was used by
those who claimed that abortion was wrong. The basic argument for the position
that abortion was wrong went like this: It is wrong to kill an innocent human
being. A human fetus is an innocent human being. Abortion involves killing a
human fetus. Therefore, abortion is wrong. It was claimed that this was not a
proper argument because the term human being meant different things in two of
the premises. In the first premise human being means an individual with full
moral status, but in the second premise human being is used in its biological
sense. The claim was made that not everyone believes that every member of the
human species has full moral status, so we should not use the term human being
in this argument. It was proposed that everyone involved in the discussion
abortion use the term person to represent those individuals who have full moral
status. Since this discussion in the 1970s the term person has been used in the
ethics literature as a technical term which is defined as those individuals who
have full moral status.
However, it seems to me that the term person has the same
problem as the term human being. In common usage it means other things than
individuals with full moral status. It is commonly used to refer to adult human
beings although children are sometimes included in who we think of as persons.
It many times means those with whom we communicate and have a relationship. In
legal terms it means something different. It refers to those who have certain
rights and responsibilities under the law. It involves those who can be held
accountable for their actions and those who can do such things as owning
property and entering into contracts. The legal definition a person can include
entities that are not human beings such as corporations. This becomes a problem
when we look at how we define who is a person. Instead of looking at how we
should understand who has full moral status, we tend to look at who fits with
how we commonly use the term person. The Supreme Court in Roe v. Wade stated
that “the unborn have never been recognized in the law as persons in the whole
sense,” but that does not necessarily mean that the unborn do not have full
moral status. Mary Ann Warren asserted that it is those who we consider to be
persons rather than those who are genetic human beings who make up the “set of
beings with full and equal moral rights.” However, she defined personhood based
on cognitive capacities that are characteristic of fully healthy adult human
beings who are moral agents and leaves out many, such as infants and those with
cognitive disabilities, who we would commonly consider to have full moral
Using the terms human or human being to represent those who have full moral status assumes that all biological human beings have full moral status. Using the term person to represent those who have full moral status assumes that having full moral status is based on something other than being a biological human being. But that is the question. What we are trying to decide is whether it is correct to decide who has full moral status based on being a member of the biological category of beings we call human beings or based on having certain cognitive attributes or capacities. Since both terms essentially beg the question, it would be better to use neither. In discussing whether a fetus or some other individual has full moral status we need to focus on how we decide who has full moral status and recognize that using the terms human being or person in a moral sense represent positions on that issue.
Many of our discussions in bioethics are about whether the
things that are possible to do with advances in medical technology are things
that we ought to do. However, some of the moral concerns in medicine are much
more basic. They have to do with the idea that dates back at least to the
Hippocratic oath that physicians should use their knowledge for the benefit of
the people they treat. Patients should not be used by physicians in ways that
are harmful to the patient in order to increase physicians’ income.
Medscape recently reported on a study presented at the American Society for Reproductive Medicine 2019 Scientific Congress which looked at how well fertility clinics across the US complied with the Society’s online advertising policy. They found that many clinics were not following the policy. The major concern was that there were a significant number of clinics that were advertising success rates without revealing the additional information needed to make that rate meaningful. The most serious concerns had to do with clinics that advertised high success rates without revealing that they also had higher than recommended rates of transferring more than one embryo per cycle and had significantly higher than expected rates of twin pregnancies. It is well known that twin pregnancies have a higher risk of complications for both the mother and the babies. Transferring more than one embryo increases the chance of achieving pregnancy and live birth with a cycle of IVF but also increases the likelihood of twin or other multiple gestation pregnancies and the risk to the mother and babies. By transferring more than one embryo in situations in which it is not generally considered justified, these clinics are increasing the success rate that they advertise to obtain patients by doing something which causes harm to their patients.
When the physicians at a fertility clinic prioritize their
income above doing what is best for the people they are treating, they have
gone beyond unethical business practices. They have abandoned one of the main
things that makes the practice of medicine a moral profession.
The angel who surprised some shepherds outside of Bethlehem
brought them good news. They were told that a baby had been born who would be a
savior and that they were being invited to go and see him. I suspect the
shepherds thought they deserved some good news. Things were not going very
well. They were living in a nation that had been conquered by Rome and the
recent requirement that everyone be registered in their hometown was for the
good of Rome, not for them. It is likely that the kind of savior they were
looking for was one who would save them from their Roman oppressors.
The shepherds answered the invitation and went to see this
baby who was going to be a savior and told Mary what the angel had told them.
Mary pondered this in her heart. She knew something the shepherds did not. She knew
that this baby, who the angel said would be the Messiah and Savior, was not an
ordinary child. He had been conceived miraculously by the Holy Spirit. She also
knew that an angel had told Joseph that they should name the baby Jesus because
he would save his people from their sins. That was a deeper good news than the
shepherds probably understood.
When we think of good news in medicine it commonly means
that a new more effective treatment has been developed or possibly that a disease
that previously had no effective treatment can now be cured. Those things are
good news, but however many new treatments are developed, we still all die.
The good news of Christmas gets at something deeper. The
Bible helps us understand that the reason that the diseases and death that
medicine battles exist in this world is because we and the world we live in are
broken by sin. No matter how many new treatments we develop, medicine cannot
address the underlying problem. The angel told the shepherds about the ultimate
cure. A savior had been born who could reverse the effects of sin and death and
save us from our sin. He could bring us eternal life. He did that by going to
the cross and showed his victory over sin and death by his resurrection. That
is good news.
Recent public reporting of some cases in Canada of people
with dementia whose lives have been ended by euthanasia have caused me to think
about the value of human life in those who have dementia. Canadian law requires
the person whose life is ended by euthanasia to have mental capacity for
informed consent, intolerable suffering, and a foreseeable death. It was
initially thought that patients with dementia would not be candidates for
euthanasia under the Canadian law because of the requirement for mental
capacity, but now there euthanasia providers who have concluded that there are
some patients with dementia who have sufficient symptoms from their dementia to
qualify as having intolerable suffering but still have adequate decision-making
capacity. The discussion there has focused on whether person who is at the
stage of dementia that causes intolerable suffering can still have adequate
mental capacity. I have a different concern.
When we try to define intolerable suffering in the context of euthanasia it appears to mean that the person who is requesting euthanasia has decided that the effects of an illness have reached the point that the illness has made his or her life not worth living. When we talk about intolerable suffering and euthanasia the first image that comes to mind is a person with excruciating and untreatable pain, but it turns out that pain is not the most common reason for people to request euthanasia. It is more commonly requested due to a loss of control and increased dependency. This is not surprising since we live in a society that places high value on independence and autonomy. However, is independence really what makes human life worth living or is that a widely believed but untrue fiction in our society? Aren’t we all dependent? As children we are dependent upon our parents. As we go through adulthood, we are dependent on spouses and friends. As we age, we become dependent on our children and neighbors. Loss of independence makes us more clearly human, not less human. The impairments of old age, whether they be physical or mental, make it harder for us to deny our dependency, but loss of control (which is what loss of independence is) and increased dependency should not be seen as something that makes life not worth living. It draws us deeper into the relationships that are an essential part of being human.
Living with dementia is difficult for the person with dementia and for those who love and care for persons with dementia, but it does not make the life of a person who has dementia not worth living. The person with dementia is still a person who has relationships that are important, even when the one with dementia can no longer remember who those people are, because the person with this dementia is still the same person. He or she is still the mother or father, sister or brother, or friend. He or she is still a uniquely created child of God. Our response to those who feel that life is no longer worth living because of the loss of cognitive abilities and independence should be to help them understand that their lives are worth living because they are valuable to us.
The “bio” in bioethics means life. Although it includes
other types of life the focus of bioethics is on human life. The announcement a
year ago of human infants born in China after their genes had been edited has
caused us to think this year about how human life should come into being.
The story in Genesis of the creation of humans tells us some
things about who we are. We learn that we are created beings made from the
material substance of creation with the breath of life breathed into us by God.
We are made to be male and female and complement each other. When we come
together in marriage, we have been given the ability to bring new human beings
into the world as a result of our union as one flesh. Each new child is given
to us as a gift from God. We also learn that God made us in his image so that
we are intended to reflect his glory in the world we have been given to
steward. That sets us apart from other created life and puts great value on
every human being.
How does all this impact how we think about how we bring new
human lives into the world? It means we should remember that each new child is
a gift from God who should be accepted unconditionally. Children are not intended
to be something we make to fulfill our own desires. Each new human being from
the very beginning of his or her life has great value. It means we should
hesitate to modify the genetics of a new human being to give that child the
genes that we think are best. It also means that we should show great respect
to any human being who is a subject of research. Human subject research can be
very important, but the subjects should enter in voluntarily giving of themselves
as a gift to others. When we do research on human beings who are not able to
volunteer, the research should cause no more than minimal harm. We should not
see human embryos as a disposable resource for research.
As our family travels to our home to celebrate Thanksgiving
together this year, I am thankful for each of their lives. I am thankful for my
parents who brought me into this world and nurtured me both physically and spiritually.
I am thankful for my wife whom God has given to me as a faithful partner and
the children God gave to us. I am thankful for the spouses God gave to them and
the children they have been given. Above all I am thankful to the God who gives
Rights of conscience, the moral concept that physicians or other medical providers should be able to choose not to provide or participate in medical treatments which they believe to be morally wrong, continues to be widely debated in our society. A recent article in Vox titled “He needed a gender-affirming procedure. The hospital said no.” Expresses some things that I think are misunderstandings of what this debate is about.
mentions other faith-based institutions, the article is primarily about the
types of procedures which Roman Catholic hospitals in the United States do not
provide under the Ethical and Religious Directives for Catholic Health Care Services. Throughout the article it is
stated that Roman Catholic hospitals have refused needed care to persons
seeking care in those hospitals. It also raises the concern that people may die
because they are not provided necessary emergency care and care from another
hospital willing to provide the care may be too far away. My main concern with
this article is that there appears to be a misunderstanding about the
distinction between needed and desired treatment. Among the things listed as
needed care are “fertility treatment, gender-affirming care, or tubal ligations.”
The article begins with the case in which a Roman Catholic hospital would not
provide an elective hysterectomy to a biologically female person who identified
as being male. The hospital’s reason for not providing this elective surgery
was not because it was desired as a part of the person’s gender transition.
They chose not to provide the surgery because of their belief that removing a
healthy uterus impairs fertility in a way that should not be done.
There is a
difference between desired elective treatments that people may choose to do
even though there is no medical reason why they need to be done and treatment
that is either life-saving or needed for other medical reasons. Such things as
fertility treatments, gender affirming surgeries, tubal ligations, and
abortions are elective treatments that an individual may choose to do but are
not medically necessary. There is an appropriate difference between the
obligation of a physician or hospital to provide medically necessary and
life-saving care and the presumed obligation to provide elective medical
treatments that are desired but not medically necessary.
I am not
Roman Catholic, but I practiced in a Roman Catholic hospital for about 30
years. I served on the ethics committee at that hospital as well. I became very
familiar with the ethical and religious directives and the type of things they
direct Catholic hospitals not to do. These things are elective treatments or
procedures that a person may desire, but which are not medically necessary. I
also became familiar with the important role that Roman Catholic hospitals play
in providing care for the poor and marginalized, many times providing care for
people that other hospitals and physicians would not. Those who think that our
society would be better without Roman Catholic and other faith-based hospitals
are quite mistaken. If those hospitals are forced out of our society by those
who would require them to do anything that anyone requests even when they
believe that those things are wrong, the poor and marginalized in our society
will suffer greatly.
In an interesting article in the Hastings Center Bioethics Forum, titled “Hannah Arendt in St. Peter’s Square,” Joseph Fins and Jenny Reardon write about the importance of deep ethical reflection in dealing with the ethical challenges of biomedical research. They point out that when ethics becomes a matter of simply following a set of rules we can end up in the wrong place. Even such fundamentally good concepts as informed consent and the need to have research proposals reviewed to be sure that they are ethically sound can lead to a mindset of regulatory compliance, essentially following the letter of the law, while leading to poor conclusions about what we ought to do. In the end they suggest that in order to facilitate deeper ethical thinking regarding new areas of biomedical research we need more interdisciplinary conversation between the sciences and engineering on one hand and the humanities and social sciences on the other. I think this is quite true and is a strong argument for a liberal education in its classic sense.
However, I find it particularly interesting how the thinking
of Hannah Arendt enters into their discussion. Arendt was a German Jew who fled
from Europe to the US in the Nazi era. She wrote about the kind of thinking
that allowed the totalitarian regimes of Hitler and Stalin to gain control.
Fins and Reardon focus on her idea that logical thinking can lead from a
seemingly self-evident statement to a replacement of common sense with thinking
that leads in a direction that is very wrong. They see a culture in medicine
and science that considers ethics as a matter of regulatory compliance rather
than deep reflection an example of this.
What I find most interesting in Arendt’s thinking is the
idea that logic will lead to faulty conclusions if the premise is not true. The
problem that she saw in the thinking leading to totalitarian regimes was not
that the thinking was illogical. The problem was that the seemingly
self-evident statements which were used as the premises were false. When we
apply that to ethics it means that we will only reach sound ethical conclusions
when we begin with moral premises that are true. A liberal education with
interplay between the humanities and the sciences is one way to seek true
premises for our ethical thinking in the wisdom that can be found in the
interplay of academic disciplines. Another is to recognize that the existence
of common sense morality suggests a source of moral wisdom that is beyond human
wisdom. Christian ethics finds its premises in that higher source of moral
wisdom. A Christian liberal education integrates them both.
I teach it course on human diseases for students in a public
health program. One of the things that we talk about is asymptomatic disease.
If a disease has no symptoms the only way that we can detect it is by
screening. For screening to be beneficial it needs to be able to detect
asymptomatic diseases accurately and there needs to be something which can be
done that will help those in whom the asymptomatic disease is diagnosed. Many times,
a screening test will only be accurate if the test is used to screen a selected
population which is at risk. Sometimes there are asymptomatic diseases which we
can detect accurately, but the people diagnosed do not benefit because there is
not something we can do to make their life better than it would be if the
asymptomatic disease had not been diagnosed. Since the purpose of screening is
to help people, there is no reason to do it if the people being screened will
not be helped. That idea is based on the principle of beneficence. Everything
that we do in medicine should be done for the benefit of the person being
Some people do not follow that moral principle. There have
always been some who have used the practice of medicine to benefit themselves
more than those they were treating. That is why the Hippocratic physicians had
to put a statement about beneficence in their oath. One of the ways that the
principle of beneficence can be violated is for some people to encourage other
people to do screening that will not benefit those being screened but will
benefit the one doing the screening. One of the examples I see most often is
supposedly low cost ultrasound screening for such things as carotid stenosis.
Those doing the screening can make a significant amount of money by screening
everyone who will accept their pitch but the people being screened do not
benefit. It is currently not recommended to screen for asymptomatic carotid stenosis
because there is no evidence that intervention is beneficial for those who are
diagnosed and some evidence that intervention may cause more harm than good.
As new technology is developed it is subject to being used in a way that violates the principle of beneficence. One of the new ways to do that is with genetic screening. A recent article in the health news section of Reuters.com describes the fraudulent promotion of genetic screening to older adults in the US. Again, this is screening being done to benefit screeners who have collected huge sums from Medicare while providing no benefit to those being screened.
These abuses do not mean that we should not do screening. It
simply means that screening should be done the right way. We should choose
which screening tests we use and which people we screen with those tests based
on how the screening will benefit those who are being screened. We should not
do it to benefit those who are doing the screening.
Many of the posts on this blog involve cautions that there
are things in medicine which we are capable of doing and which some want to do
that we should not do. Much of the time those cautions go unheeded by our
society. For fifty years we have been saying that we should not perform
abortions, but many unborn human beings continue to lose their lives. We give
reasons why we should not do euthanasia, but PAS becomes legal in state after
state. We write about why we should not alter the genes of human embryos, but
the research continues. Is it just that we are anti-medical science and like
telling people what they should do?
No. We do it out of love. Sometimes it is love and concern
for people who are powerless and cannot speak for themselves. It is because of
our love for the person who is aborted as a fetus or comes into being as the
result of a genetic manufacturing project rather than being accepted
unconditionally as a gift. It is out of love for the Canadian man who chooses
euthanasia because he cannot obtain the 24 hour a day care he needs to live
life with ALS.
It is also out of love for those who do things that are
wrong. Love for the physician who performs abortions or euthanasia. Love for
the researcher who uses human embryos as research subjects destined to die. We
do it for the sake of the gospel which tells us that we have all done wrong and
are destined for judgment unless someone intervenes. The gospel that tells us
Jesus did intervene by his death and resurrection and has made forgiveness and
restoration available to all who confess their wrongdoing and put our trust in
him. We do it for those who will miss out on the amazing grace of the God who
died for us if they listen to a culture that says that anything you desire to
do is right and there is no need to ask for forgiveness for anything.