St. Columba’s Church, Johannesburg, SA (10-20-15)
Nancy J. Duff
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| Rev. Dr. Chunky Young with Rev. Dr. David Mertz and his wife Rev. Prof. Nancy Duff. |
Without clear indication from a physician that life saving
treatment has become futile, patients and their families feel caught between
fear that further treatment will do more harm than good and hope, however thin,
that the next round of treatment will produce the miracle they’re hoping for.
They rarely get clear indication from doctors that further treatment cannot
stave off death for long, or in any meaningful way.
But it’s interesting that most physicians say they won’t
choose medical intervention when they’re close to death. “A Stanford University
study shows almost 90 percent of doctors
in the US would forgo resuscitation and aggressive treatment if facing a
terminal illness.” Referring to Dylan
Thomas’s poem, one professor of medicine said of his own end of life care:
"There will be no heroics, and I will go gentle into that good
night." But those same doctors
aren’t often able to advise patients to do the same.
There has, however, been something of a shift in this
scenario in the United States. While it’s still true that patients wait for
doctors to give permission to stop treatment, while doctors want to do more,
there is an increasing number of cases where doctors are ready to stop
life-extending treatment, while patients, or more often their families, insist
that everything be done. They choose to “rage against the dying of the light”
against all odds and sometimes against all reason.
In the hospital where I’m on the ethics committee, we had a
case where a patient’s body was deteriorating to the point that the odor of
death filled his room, and yet the patient’s wife insisted that medical
treatment continue – until he died. Whether it’s doctors or patients demanding
continued treatment, or saying “Enough!,” knowing when to resist death and when
to accept death is a moral and existential dilemma that isn’t easily resolved.
In the United States, the public and legal debate over the
ethics of resisting and accepting death started with cases that involved
requests to withdraw life support from patients in a permanent vegetative
state:
•
In 1976 the New Jersey State Supreme Court
allowed the respirator to be removed from 21 year-old Karen Quinlan, who was in
a permanent vegetative state. Her parents, who were faith Roman Catholics
accompanied by their priest, didn’t want the feeding tube removed, and probably
wouldn’t have been given permission to remove it anyway.
•
Seven years later, in 1983 the US Supreme Court
cleared the way for the feeding tube to be removed from 25 year-old Nancy
Cruzan who was in a permanent vegetative state.
•
These two cases resulted in legal decisions that
emphasized patient autonomy, living wills, and the right to die. But they did
not put the controversy to rest.
•
In 2005, Terry Schiavo’s husband’s request to
remove her feeding tube was granted for the third and last time. Public
officials who spoke against the action included then governor of Florida, Jeb Bush,
and the President of the United States, George W. Bush.
•
And as recently as 2014, the body of 33 year-old
Marlise Muñoz was kept on what would usually be called “life support,” but we
can’t use that term because she had been declared dead at John Peter Smith
Hospital in Fort Worth, Texas. She was kept on those machines against the
family’s wishes because she was pregnant. The hospital finally admitted that
the baby, who had been deprived of oxygen for over an hour, wasn’t viable.
If in the US, there’s no agreement on withdrawing life
support from a person in a permanent vegetative state, or taking the body of a
person already pronounced dead off machines, you can imagine there is fierce
debate over the issue of assisted death.
That debate escalated last year when 29 year-old Brittany
Maynard made public her decision to end her life after being diagnosed with
brain cancer and given only six months to live. She moved from California,
where assisted death was then illegal, to Oregon in time to establish residency
and take advantage of Oregon’s death with dignity law. Had the brain cancer
been allowed to take its course, permanent sedation would eventually have been
required to control her pain – and that was something she didn’t want. She
ended her life on November 1, 2014.
The legal situation in the US is somewhat complex. Because
the U.S. Supreme Court ruled in 1997 that there is no constitutionally
protected right (it wasn’t declared unconstitutional), the decision is left to
each state to decide whether to adopt a death with dignity law. Five states in
the US allow assisted death.
·
Oregon (the first, 1997)
·
Washington State (2009).
·
Vermont (2013 – by act of Vermont legislature
rather than popular vote)
·
As of two weeks ago, California
·
Montana decriminalized assisted death in 1998,
but doesn’t have a death with dignity law.
Death with dignity laws allow physicians to prescribe lethal
doses of medication to terminally ill patients, but there are restrictions.
·
Physicians write the prescription, but are not
allowed to administer the medication directly. No one is. (A few physicians
choose to be present at the time the pt takes the lethal dose of drugs, but are
not required to do so.)
·
The patient who receives such a prescription
must have a prognosis (confirmed by two doctors) of six months or less to live.
·
The patient has to be competent. Doctors have
the right to require a psychological evaluation, although they rarely do.
·
Each patient must be informed of other options,
including palliative and hospice care.
·
Any patient may change his or her mind at any
time. In fact, some patients fill the prescription, take it home, and never use
it.
Outside those five states it is a felony to assist someone
in suicide. Many people who support death with dignity laws, use the term
“assisted death” rather than “assisted suicide,” because people with a terminal
illness (unlike people who seek to take their lives because of despair or mental
illness) want to live, but living is no longer an option: they know they are
going to die. Assisted death gives them one of the few choices they have left
to control the situation: to choose when and how they will die instead of
allowing the disease to make that choice for them, all the while robbing them
of all the pleasures of daily life.
Three groups in the US have provided the most vocal
opposition to assisted death: (A) the Catholic Church and conservative
evangelical Christians, (B) disability-rights organizations, and (C)
physicians. For the rest of our time together, I’m going to describe some of
the arguments that each of these three groups present and respond to them.
A. CHRISTIAN PERSPECTIVE: AGAINST
1. Divine Sovereignty. Christians who are against assisted
death often base their argument on divine sovereignty, claiming that because
our lives belong to God, we shouldn’t thwart God’s purposes by ending life even
in light of impending death. We need to put all our efforts into tending to the
needs of a dying person: pain management, being present, and making that person
comfortable – but we cannot help that person take his or her life. We cannot
play God.
2. Autonomy. Some Christians argue that emphasizing
individual autonomy to give a person the right to end life destroys the bonds
among people that the Christian community values. As part of the body of
Christ, we don’t make independent and autonomous decisions, and we should be
able to rely on the people around us as we suffer with terminal illness and
pain. In turn, members of the community are called to care for the sick and
dying as they suffer – not help them end their lives.
3. Suffering. These Christians sometimes argue that while
suffering should be alleviated to the extent possible by medical intervention,
pain also needs to be endured in faith. When Brittany Maynard made her plans to
take her life public, Kara Tippetts, a 36 year-old mother of 4 young children
who was dying of breast cancer, wrote a letter to Brittany Maynard on a blog.
In her message, she spoke of Christian faith, suffering, and death:
Brittany, … You have been told a lie. A horrible lie, that
your dying will not be beautiful. That the suffering will be too great. … Yes,
your dying will be hard, but it will not be without beauty.
Hastening death was
never what God intended. But in our dying, He does meet us with His beautiful
grace. Conservative evangelical Christians like Kara Tippetts don’t
intend to glorify suffering, but to sanctify it, believing we can glorify God
even in our suffering.
The Roman Catholic Church, which has long allowed the
withdrawal of life support in certain circumstances, has also stood strongly
against physician assisted death, articulating some of the same arguments as
conservative evangelicals and believing that if a dying patient is properly
cared for, that person will not request assistance in hastening death.
A. CHRISTIAN
PERSPECTIVE: IN FAVOR
•
Divine Sovereignty. I agree that in life and in
death our lives belong to God. But I don’t think the charge of “playing God” is
useful. We could just as easily argue that we are playing God by not letting
someone die and by making every effort to keep a person alive, even when
medical intervention does nothing but extend dying. Aren’t we assuming god-like
control by insisting that a terminally ill patient face all the suffering,
limitations, pain, and indignities that the disease hands out when medical
intervention can’t control it? I think we should leave the phrase “playing God”
behind and ask instead how to serve God’s purposes for the specific suffering
human being who stands before us.
•
Autonomy. I agree that autonomy is not exactly a
Christian virtue. Christians understand themselves as individuals who are part
of the body of Christ. What we do – the decisions we make – aren’t about us
alone:The eye cannot say to the hand, ‘I have no need of you,’ nor again the
head to the feet, ‘I have no need of you.’
On the contrary, the members of the body that seem to be weaker are
indispensable,” says Paul in I Corinthians. (I Cor. 12:21-22)
But choosing assisted death doesn’t preclude conversations
with other people or considerations of how such an act will affect others. All
through his book Final Exit, which instructs terminally ill people on how to
take their lives, Derek Humphries encourages people with terminal illness to
talk to their family and friends before making such a serious decision.
But even if we don’t embrace autonomy, the Christian faith
doesn’t say that some people have the authority to make decisions for everyone
else. Kara Tippetts, the woman with breast cancer who posted the letter to
Brittany Maynard, died March 22, 2015. She was a good example of someone who
didn’t emphasize autonomy, relying on other Christians to help her carry the
burdens that cancer had forced upon her.
I admire the way she chose to face death. I don’t, however understand
why she thought her choice should be imposed on everyone else, or why she
thought God’s grace doesn’t meet someone when death is hastened by drugs. And I
disagree with her claim that suffering is beautiful.
Jessica Kelly,
another evangelical Christian, posted a response to Tara Tippets, insisting
that suffering at the end of life isn’t always beautiful. Having lost her young
son to brain cancer she wrote:
Trust me, Brittany has been told the truth. My son’s death was not beautiful. His suffering was great. … At first we were
able to manage his pain with modern medication, but as the tumor grew, the pain
would find a way to exceed the medication’s capabilities. He would often wake
with a scream, gripping his head as the pressure increased from the fluids
trapped within his skull.
She concluded by saying: “There is no place in the Bible
that says death is beautiful. It stands among the powers and principalities and
is the last enemy to be defeated by Christ.”
Here, this mother has touched on what I believe is the
foundation for a Christian ethic of resisting and accepting death: there are
two views of death in the Bible. On the
one hand, the Bible says death stands among the powers and principalities. It
is the enemy to be fought against. (I Cor. 15:26) Death cannot be viewed simply
as a transition from one stage of life to another and certainly is not to be
understood as beautiful. On the other hand, the Bible says death is part of
created life. We are created human and not divine, so we live within the limits
of birth and death.
Acknowledging that death is part of what it means to be
human is not the same as a certain “death is natural movement.” There are
situations where death comes as a friend, but Christians shouldn’t be seduced
into believing that death is simply the final stage of growth – an odd claim
since death actually means that all possibility of growth in this life is gone.
Even saying that death is a natural part of life is odd, because in reality it
isn’t part of life, but the end of life.
The homilitician, Tom Long, offers one of the worst
instances of the death is natural movement that he found in one denomination’s
study document [The] death of an older person should be a beautiful event.
There is beauty in birth, growth, fullness of life and then, equally so, in the
tapering off and final end. There are analogies all about us. What is more
beautiful than the spring budding of small leaves, then the fully-leaved tree
in summer; and then in the beautiful brightly colored autumn leaves gliding
gracefully to the ground? So it is with humans.
I don’t know what the study means by “older person,” but I
can tell you that at 64, I find those reflections insulting. And when my 90
year-old mother passed away last year, even knowing that she was very sick and
ready to die, I could never compare her death to a leaf gliding from a tree in
the fall.
We are created mortal human beings and not gods. Our life is
bounded by the limits of birth and death, and we have to face our mortality.
But Scripture also tells us that death stands among the powers and
principalities. I’m suggesting we need to hold those two things in tension.
My question regarding assisted death as a Christian is: When
Death as the enemy brings intolerable suffering that dying, left to its own
time-table, will not soon resolve and medical intervention cannot alleviate,
why is choosing to hasten one’s death thought to fall outside the will of God?
B. DISABILITY RIGHTS: AGAINST
The primary argument against assisted death by disability
rights organizations is based on the slippery slope. If we allow individuals
with a terminal illness to take their own lives, so their claim goes, we will
eventually find ourselves in a situation where people with disabilities and the
elderly will either be pressured to take their own lives or eventually have
their lives taken from them against their will.
According to disability rights organizations, if we allow people with
terminal illness to take their own lives, we will inevitably slide into
involuntary euthanasia.
B. DISABILITY RIGHTS:
IN FAVOR
The slippery slope argument is often dismissed by supporters
of assisted death as a philosophical fallacy, but I don’t think we can entirely
ignore it. Intellectual honesty requires us to consider whether it’s possible
for our position to carry us to a more extreme stance than we want to embrace.
For instance, we know that some vulnerable members of society such as elderly
patients in nursing facilities are already abused. Their care can be burdensome
and costly. Might someone coerce them into choosing death or even directly
administer the drugs against their will?
I think it’s careless not to invoke the slippery slope. But
the fallacy of the slippery slope argument occurs when one assumes the slide
into a more radical action is inevitable. Just because abuse can occur doesn’t
mean it will occur. We need to put better systems in place to protect the
elderly and people with disabilities right now and certainly we need to keep
them safe if assisted death is made legal.
People with disabilities have every reason to fight for the
right to live free from all forms of discrimination. And they have every good
reason to expect us to fight with them. But they don’t have the right to insist
that other people suffer because they think others should endure suffering
rather than choose death.
And, in fact, some people with disabilities are angry
because they can’t take advantage of death with dignity even when it’s legal.
For instance, by the time people with ALS (amyotrophic lateral sclerosis) are
six months from dying, they can no longer hold the glass of lethal drugs
without assistance. Disability rights organizations aren’t protecting all
disabled people from discrimination. They are actually increasing the suffering
of some.
It’s true that the church cannot say it believes a person’s
life has ceased to have value or has become useless and no longer productive.
No matter what the situation, no matter how bad the pain or distorted the body,
a dying person’s life does matter. But we also have to recognize that some
people who are dying reach a point where life has ceased to have value for them
– no matter what we think.
One terminally ill person suggested that we each have a list
of those things – that if lost – would mean life was no longer worth living.
A
woman on the ethics committee told us that her dad said before surgery: “If I
can still watch football and drink beer, then I want to live.” (What’s odd is
that she said as far as she knew, her father had never watched football in his life.)
Others say if they loose the capacity to work in the garden, or interact with
their children or grandchildren, or enjoy a meal, life will lose its value for
them. Assisted death refers to voluntary requests made by people who want to
control when they die. We can make assisted death legal and put controls in
place, so that is doesn’t lead to the death of people who want to live.
C. DOCTORS: OPPOSED
Many individual doctors and all but one physicians’
organizations in the U.S. say that for a doctor to prescribe a lethal dose of
medication goes against everything medicine is meant to do. Arguments against assisted death in the world
of medicine usually make two points: (1)
Medicine is for cure and care, not killing and (2) there are alternatives to
assisted death: hospice and palliative care. With proper care, they argue,
terminally ill patients don’t need the alternative of assisted death. We have
the tools at hand to take care of them.
C. DOCTORS: IN FAVOR
Only one professional organization for physicians, The
California Medical Association, has changed its long-held position against
assisted death. And there are individual doctors who support assisted death.
Timothy Quill is the best known. He
published an essay in the New England Journal of Medicine in 1991, titled
“Diane,” giving an account of how and why he prescribed barbiturates for a
45-year-old woman with a severe form of leukemia who didn’t want to continue
treatment. She had been his patient for many years, and he disagreed with her
decision. But after extensive conversations with her and her family, he knew
she was “mentally alert and making her decision calmly, fully aware of all the
alternatives.”
Medicine isn’t just about cure; it is always about care. But
care means listening to the patient, to what he or she fears the most, and how
that patient wants to face death. Alleviating suffering has to be among the
primary goals of medicine. And it simply isn’t true that we always have the
tools to manage suffering.
•
The woman whose child was dying said, “The pain
always found a way to leak through.”
•
In a documentary called “How to Die in Oregon,”
a man’s brain tumor began to press upon his eyes until he couldn’t close his
eyelids. No medical intervention could address his pain.
And pain isn’t actually the primary reason people have taken
advantage of death with dignity laws: loss of autonomy, decreasing ability to
participate in activities that made life enjoyable, and loss of dignity are
often cited as reasons people want to take advantage of a death with dignity
law.
One of the benefits of the debate over assisted death is
that more people have become aware of hospice and palliative care. Also, people
don’t typically take their lives immediately upon receiving the prescription
for a lethal dose of drugs, and some never use the lethal dose at all. It is an
action of last resort in case things become unbearable. There is evidence that
the freedom of knowing they have a choice enables patients to enjoy the life
they have left. And it allows them to avoid the worst forms of suffering their
illness is going to dole out if left unchecked.
CONCLUSION: ETHICS
As we consider the ethics of resisting and accepting death,
I think Christians should move away from absolute principles, such as “Thou
shalt not kill” and think contextually. As a Christian ethicist I don’t believe
divine commands are absolute. We don’t keep or obey the commandments. We obey
the living God who gives them. Divine commandments aren’t abstract principles
we adhere to no matter what the situation. And the summary of the commandment
is to love God, neighbor, and self. We don’t serve God or neighbor by following
the letter of the law.
Also, the commandment against killing – as with all the
commandments – has a positive message – to preserve and protect life. I don’t
believe that protecting life means we keep people alive for as long as
possible, no matter what their pain or suffering or how meaningless life has
become for them. Protecting life can’t mean we keep bodies animated. No
Christian understanding of what it mean
to be human reduces our humanity to an
animated body, such as in permanent sedation at the end of life.
It may sound like double speak to say that protecting life
leads us to support assisted death, but I believe it does. We are protecting
the integrity of the life of someone with a debilitating, life-threatening, and
sometimes painful disease by giving them control over when and how they die, so
they can face death on their own terms and not let Death control the final
weeks and hours of life. We should call into question any approach to ethics
that tries to apply “clear formulaic principles” if those principles cannot
take into account the suffering of patients. Such principles arise from a
theoretical construct and aren’t appropriate for the “daily living of human
life” as my teacher and mentor, Paul Lehmann, used to say.
We should certainly resist death as long as living is still
a genuine possibility, but we shouldn’t prolong the agony of dying. We can
accept death and even support the hastening of death when such an action is
freely chosen by someone who wants to control the final days of life. And we do
so, knowing with certainty that in life and in death we belong to God.
