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.
About this time in the semester, after discussing some basic
things about the discipline of ethics and looking at some of the main ethical
theories in western philosophical ethics, I begin a discussion of Christian
ethics with the students in my bioethics class. I intend this to form a
foundation on which they can ground their thinking about the issues in
bioethics that we will discuss throughout the rest of the class. This year I
decided to begin by talking about what Christian ethics is not, because we live
in a world that has misunderstandings about many things including Christian
Here are the things that I have suggested to them that
Christina ethics is not.
#1 It is not that we are better than they are (or that I am
better than you are.)
Commonly when someone says that something is wrong, those
who want to do it say that those who say it should not be done are trying to
show that they are morally superior. I think this is a common motivation for
making moral statements, but it should never be a part of Christian ethics. It
contradicts what we, as Christians, believe. A fundamental part of the gospel
is that we are all wrong. We are all sinful and in need of redemption. It is
essential to our faith to believe that we are not better than anyone.
#2 It is not about what I think is right.
For those who believe in subjective relativism, ethics is
truly about what I think is right. For the cultural relativist it is about what
my group thinks is right. Even among many moral philosophers who believe in
objective moral truth, whether they are Kantians or Utilitarians, ethics is
about what I can determine to be right, based on my intellect and reason. From
a biblical Christian viewpoint, it is what God thinks is right that is
important. We are just trying to understand what he has revealed to us. None of
us understands the mind of God completely. When we disagree, discussing why we
think as we do can help us both get a better understanding of what God thinks
#3 It is not about being good enough for heaven (or earning
a relationship with God.)
Our society’s cultural religion says that as long as we do
more good than bad, we can expect heaven as our reward. The Christian gospel
says that our relationship with God and ultimate destiny are entirely dependent
on Jesus’ death and resurrection. It is not about being good enough or doing
more good than bad. So why do we care about ethics? Genesis says that we were
created in the image of God. One of the things that means is that God intended
to be a reflection of himself and his glory. Since God is a moral being who is
good and we are sinful, we must be transformed to reflect God and bring glory
to him. Living morally upright lives
through the transforming power of the Holy Spirit as people who have been
reborn through Jesus’ death and resurrection allows us to worship God by living
lives that reflect his goodness. That is what Christian ethics is.
I have been thinking about this for a while, and even more
since I recently retired from practicing medicine (but not from teaching) and
realized while working through our retirement plans that my current will
contained instructions about who should care for our young children if my wife
and I would both die. Well, those children are now 40, 37 and 34. They have
their own children and will be fine on their own when we die. I need a new will
and one part of that is that I need to decide who will make medical decisions
for me when I am unable to do so for myself. All three of our children share my
values and will make excellent decision makers for me, but I want them to have
something to go by, so they understand how I want those decisions to be made.
After all, I have been a physician for over 40 years and I teach bioethics, so
I should be able to give them some guidance.
My decision to post these guidelines publicly is in part
based on what Ezekiel Emanuel did about 5 years ago when he wrote about no
longer doing any medical treatments that focus primarily on prolonging life
after he turns 75. As Neil Skjoldal wrote a couple of days ago, Emanuel’s plans
are driven by his concept of what makes life meaningful. My concept of that is
different. Being creative and productive are important, but meaning in my life
comes from my relationship with God, and that impacts how I want medical decisions
made for me. So, here is what I wrote to my children.
Principles for making medical decisions for me when I become
unable to make my own decisions:
human life has value because we are made in the image of God, so nothing should
be done with the intent of ending my life even to avoid suffering.
though human life has great value my eternal relationship with God has greater
value than my life on this earth, and that relationship will continue after my
death, so it is not necessary to do everything possible to prevent my death.
about medical treatment should be made based on whether the expected benefit to
me is more than the expected burden to me from the treatment. They should not
be made based on an idea that my life itself is burdensome.
Examples of how to apply these principles:
I am dying and death is expected soon, no treatment should be done other than comfort
care. Sedation is appropriate if needed to control pain or behaviors that are
harmful to me or others. Comfort care can usually be done outside of a
hospital, but professional caregivers should be used as needed.
treatments such as antibiotics for an infection and minor surgical procedures
should be done if it is expected that I will benefit from them and there is
little risk involved.
treatments such as ICU care, ventilators, chemotherapy, major surgery and other
invasive procedures should only be done if I have a reversible condition and it
is expected that they will only be required on a short term basis. Such
treatments can be done on a trial basis and stopped if they are not effective.
This type of treatment should not be done if I have a condition that I am dying
from and the treatment will only prolong the process of dying.
use of feeding tubes can be a difficult decision. Feeding tubes may be used if
they can be used on a short term basis to help me recover from a reversible
condition. If the condition I have is irreversible, I would prefer to be fed by
mouth to satisfy my hunger and thirst as well as possible, even if feeding by
mouth may have some increased risk.
There is much discussion and debate within bioethics about the permissibility of physician-assisted suicide, but less discussion about suicide in general. We also spent a lot of time talking about end-of-life care and end-of-life decision-making. However, we tend to focus less on suicide in general and very little on suicide among older adults who are approaching the end of life but have no terminal disease. A recent program on NPR titled “Isolated and Struggling, Many Seniors Are Turning to Suicide” caused me to think about this.
Suicide rates in the US are generally increasing. When we
think about suicide, many times we think about increases in teenage suicide rates
but forget that middle-aged and older adults have higher rates of suicide than
teens. Part of the reason for the higher rate of suicide in older adults is
that their suicide attempts have a higher rate of resulting in death, but there
are other things that put them at risk. Older adults suffer from isolation,
loneliness, grief, and depression. The older we get, the more likely it is that
we have lost family and friends close to us to death. That leads to the
isolation, loneliness, and depression that can lead to suicide. Many older
adults also live with chronic diseases which can lead to loss of ability to
perform routine daily functions and cause a loss of independence. These things
may also lead to isolation, loneliness, and depression. They can also result in
feelings of being a burden to family members. The isolation experienced by the
elderly not only leads to depression, but also makes it less likely that
someone will recognize the risk of suicide and intervene.
Do our moral obligations to provide care for those at the
end of life include dealing with the risk of suicide among older adults? I
think they do. As physicians and other medical caregivers, it is important to
recognize that suicide among older adults is a real concern and be alert to
signs that a person may be at increased risk. Intervention can be lifesaving.
We also have obligations as family members, neighbors, and fellow church
members with those who may be at risk. Decreasing isolation can make a
significant impact on the risk of suicide and all of us complaint role in that.
Suicide in older adults is a real concern, and it is something we can impact.
As I continue to reflect on the recent CBHD bioethics
conference, there are several of the sessions that stand out to me. One was the
presentation by John Kilner at the conclusion of the conference that I wrote
about last week. Another was the very first presentation as the conference
began. Lydia Dugdale spoke on the topic of “Reclaiming the Lost Art of Dying.” Many
of us have recognized that there is a tendency for people in our current
culture to die poorly. Dr. Dugdale suggested that our difficulty in dying well
is related to our level of medical technology. Because modern medicine is able
to do so much in treating and curing diseases, the allure of a cure can keep
people from accepting the reality of death. She gave as an example a case of a
woman with incurable cancer who never addressed the reality that she was dying
because every time one treatment failed another was recommended.
She reminded us that there was a time in the middle ages
when people were taught the art of dying well through a text titled “Ars Moriendi.”
This booklet was published in the 1400s following the ravages of the bubonic
plague in both literate and illiterate versions to help people prepare for
death. It included instructions on preparing willfully for death and accepting
it gladly when the time came. It spoke of avoiding temptations such as impatience,
despair, pride, and doubt. It included a catechism pointing to the truths of
the Christian faith and prayers for those who were dying.
She asked if something like this were possible for us today
and suggested that bioethics could be a framework for learning how to die well.
It can help us recognize our finitude and the limits of medicine. It can also
point us toward community which can provide the support needed for those who
are dying to die well. This may be as far as those in a secular setting, like
the one in which Dr. Dugdale works, can go. However, those of us who share
Christian faith should be able to take this farther. She challenged us with a
quote from Jean-Claude Larchet’s book The Theology of Illness in which he
says, “Ask God not in the first place for the return of health, but for what is
spiritually most useful.” That points us back to what was understood in the
days that the Ars Moriendi was written. Dying is an important part of
our spiritual life, and we can grow spiritually through the experience of our
own death as well as how we care for others as they die.
By Steve Phillips
This past week I attended the CBHD summer conference. This
year’s theme was “Taking Care: Perspectives for the End of Life.” As usual, the
conference was filled with thought-provoking sessions and many good personal
interactions. While I have much to think about from many of the sessions the
one that impacted me the most was the concluding plenary session by John Kilner
titled “Dignity and Life on the Line: Ending Well.” This session impacted me in
a number of ways. Not the least was remembering how much Dr. Kilner has
impacted my life as I listened to him talk about the end of life from the
perspective of one going through his own end-of-life journey. It also came at a
significant time for me as my wife and I have been grieving the recent death of
However, even without those very personal things, what Dr.
Kilner had to say about the end of life was significant. He reminded us that
the dignity of human life that exists because every human being has been
created in the image of God applies as much or more at the end of life as any
other time. Since God has intended in our creation for us to be an internal
reflection of him, death is truly an enemy. However, death is an enemy that has
been defeated by Jesus in his resurrection. Our approach to death can be wrong
if we fail to recognize either of these things. If we do not recognize death as
an enemy, we may not pursue appropriate treatment, or we may pursue intentional
killing as a means of avoiding suffering. Either of those is wrong. We should
intend life and not death. If we fail to recognize that the enemy death has
been defeated, we may try to avoid death at all costs and pursue over treatment
that increases suffering because we have made life on this earth into an idol.
He also reminded us that the process of dying can include
things that are positive. All human life is worth living. The life that we are
living as we are in the process of dying can be of benefit to God, others, and
ourselves. As we in our weakness put our lives in God’s hands and allow his
body, the church, to care for us, we bring glory to God. We allow others to be
blessed by serving as they care for us. In the weakness of dying we can find
the hope and joy that come from God whose strength is manifested in us in our
weakness. I pray that when the time comes God will help me to end my life well
in this way. I also pray that I will be able to help others end their lives
Thank you Dr. Kilner for all that I have learned from you by
your teaching, your encouragement, and the example of your life.
Last week I wrote about the issue of parental responsibility
and medical decision-making for children. We have good reasons for having
parents be the primary decision makers for children who are not capable of
making their own medical decisions. However, as I discussed in the last post,
there are some situations in which parents make decisions that are not in the
best interest of their child. When those decisions reach the point at which the
child’s life is in danger, society clearly has a moral obligation to intervene
to save the life of the child.
Parental refusal of recommended immunizations for their
children raises similar issues but is more complex. We can clearly demonstrate
that it is in a child’s best interest to receive at least most of the commonly
recommended immunizations for children. Those immunizations help to prevent a
child being affected by diseases that can be serious and have a very low risk
for serious adverse effects. However, the chance of an individual child being
affected by many of these diseases is relatively small and the situation is
quite different from a child whose life is in immediate danger due to a
parental refusal of treatment. Since the risk to an individual child is
relatively small and there is some possible risk to the child from receiving
the immunization, it is not clear that a parent who refuses immunizations for a
child is being negligent in the same way as a parent who refuses treatment for
a life-threatening illness. It can be argued that the best way to deal with
this type of situation is education. Many times, parents refuse immunizations
for their children because of misconceptions about the risks and a lack of
understanding of the benefits of doing the immunizations. It can be difficult
to counter widespread misconceptions, but physicians have the responsibility of
trying to do that the best that we can. However, this is not the only issue
involved in determining whether society has an obligation to intervene and
mandate childhood immunizations when parents refuse.
Immunizations are unique in the way that they work. They
help protect the individual who is immunized, but they also help protect the
community as a whole when we can achieve sufficient levels of immunity to halt
the spread of an infectious disease within the community. This is sometimes
called herd immunity. We have an excellent example of how this works with the
current measles outbreak in the United States. Measles happens to be one of the
most easily transmittable infectious diseases that we know of. It also can be
deadly in a small percentage of the people who acquire the disease. It is also
primarily a disease of children and is transmitted by children. When about 97%
of children have been immunized in a community the disease will not be
transmitted through that community and those who have not been immunized or
cannot be immunized are protected from acquiring the disease. This level of
immunity was accomplished in the United States about 20 years ago and for some
time the only cases of measles that were seen in the United States were cases
that originated elsewhere. However, because of parents refusing to have their
children immunized for measles in significant numbers in some parts of the
country, herd immunity is no longer present and we are having outbreaks of
measles this year that are more than we have seen in 20 years.
That raises a different question. Should we mandate
immunization of children for diseases such as measles and override parental
decision-making not solely for the benefit of the children whose parents refuse
to have them immunized but for the common good of the community? There are some
children and other individuals who cannot be immunized or for whom
immunizations would not be effective who are put at increased risk when herd
immunity is not achieved in the community. This makes the decision about
whether to immunize a child not just a decision about what is best for that
child but also a decision about what is best for the community. For Christian
parent it makes the decision about whether to immunize a child a decision about
love of neighbor. Immunizing one’s own child helps to protect the child, but it
also helps to protect the most vulnerable in the community. If we truly love
our neighbor, we should do that even if there is a small risk to our own child.
The final question is whether we as a society should require children to be
immunized for these diseases when a parent is not willing to authorize it out
of either concern for the best interest of the child or concern for those who
are vulnerable in the community.
The 2 posts on this blog this week by Neil Skjoldal and Mark McQuain raise issues related to parental decision-making for the medical treatment of their children. Neil raised this issue related to parental refusal of life-saving treatment for acute leukemia and Mark raised it related to parental decisions not to have their children immunized for measles. There are some similarities in these situations and some differences. An obvious similarity is that in both of these situations parents are making a decision to refuse treatment for their children that is the recommended standard of care. Both situations raise issues about who should make decisions about the medical care that children receive and how those decisions should be made.
One thing we should be clear about is that this is not a
conflict between the principle of respect for autonomy and the principle of
beneficence. Respect for autonomy says that a person should be able to make
decisions about what happens to his or her own body. It says that it shows
disrespect to an individual as a person to insist a person receive recommended
medical care when that person has the capability of making his or her own
decisions and does not consent to the recommended care. This principle does not
apply to decisions about the medical care of young children. Young children are
not capable of making decisions about their own care and the parents are not
the ones receiving medical treatment, so respect for autonomy does not apply to
What is involved is our understanding of parental
responsibility for making medical decisions for their children. Because young
children do not have the ability to make their own medical decisions, someone
needs to serve as a decision-maker for them. We generally understand that
parents ought to be the ones making those decisions. We have good reasons for
that. Decisions about the medical care of young children should be made based
on what is in the best interest of those children. God has created us as human
beings to be dependent during the early part of our lives. He has put us in
families with parents who have the responsibility for providing for the needs
of their dependent children. Parents should love their children unconditionally
as a precious gift and make decisions for their children based on what is best
for each child. This usually makes parents the people who care the most about
doing what is best for a child and makes them the best medical decision makers
for their child.
However, sometimes parents do not fulfill their parental responsibilities
as well as they should. None of us are perfect, but there are times when it is
clear that the decision being made by a parent is not what is best for a child.
When the potential consequences for the child are serious enough it can become
the responsibility of the rest of us to intervene for the benefit of the child.
We should not violate parental responsibility lightly, and it needs to be done
in a controlled and orderly way, but when the child’s life is in danger, we
have a responsibility as a society to intervene to protect a child. We should
do this in any type of severe neglect or abuse. We should do it when parents refuse medical treatment
for a child who is likely to die if without treatment and the treatment has a
good chance of saving the child’s life.
That appears to be the case in the situation in Neil’s post.
The concern about parents refusing immunizations for their children has some
similarities, but is more complex. It will take another post to address that.