Well written article. I feel like I am obligated to post this article on my blog.
by John Hardwig
From: LaFollette, H., ed.
Ethics in Practice (Blackwell,
September 1996).
Let us begin with two observations about chronic illness and death:
1) Death does not always come at the right time. We are all aware
of the tragedies involved when death comes too soon We are afraid that
it might come too soon for us. By contrast, we may sometimes be tempted
to deny that death can come too late -- wouldn't everyone want to live
longer? But in our more sober moments, most of us know perfectly well that
death can come too late.
2) Discussions of death and dying usually proceed as if death came only
to hermits -- or others who are all alone. But most of the time, death
is a death in the family. We are connected to family and loved ones. We
are sustained by these connections. They are a major part of what makes
life worth living for most of us.
Because of these connections, when death comes too soon, the tragedy
is often two-fold: a tragedy both for the person who is now dead and for
those of us to whom she was connected. We grieve both for our loved one
who is gone and for ourselves who have lost her. On one hand, there is
the unrealized good that life would have been for the dead person herself
-- what she could have become, what she could have experienced, what she
wanted for herself. On the other, there is the contribution she would have
made to others and the ways
their lives would have been enriched
by her.
We are less familiar with the idea that death can come too late. But
here, too, the tragedy can be two-fold. Death can come too late because
of what living on means to the person herself. There are times when someone
does not (or would not) want to live like this, times when she believes
she would be better off dead. At times like these, suicide or assisted
suicide becomes a perfectly rational choice, perhaps even the best available
option for her. We are then forced to ask, Does someone have a right to
die? Assisted suicide may then be an act of compassion, no more than relieving
her misery.
There are also, sadly, times when death comes too late because
others
-- family and loved ones -- would be better off if someone were dead. (Better
off overall, despite the loss of a loved one.) Since lives are deeply intertwined,
the lives of the rest of the family can be dragged down, impoverished,
compromised, perhaps even ruined because of what they must go through if
she lives on. When death comes too late because of the effect of someone's
life on her loved ones, we are, I think, forced to ask, Can someone have
a duty to die? Suicide may then be an attempt to do what is right; it may
be the only loving thing to do. Assisted suicide would then be helping
someone do the right thing.
Most professional ethicists -- philosophers, theologians, and bioethicists
-- react with horror at the very idea of a duty to die. Many of them even
argue that euthanasia and physician-assisted suicide should not be legalized
because then some people might somehow get the idea that they have a duty
to die. To this way of thinking, someone who got that idea could only be
the victim of vicious social pressure or perverse moral reasoning. But
when I ask my classes for examples of times when death would come too late,
one of the first conditions students always mention is: "when I become
a burden to my family." I think there is more moral wisdom here than in
the dismay of these ethicists.
Death does not always come at the right time. I believe there are conditions
under which I would prefer not to live, situations in which I would be
better off dead. But I am also absolutely convinced that I may one day
face a duty or responsibility to die. In fact, as I will explain later,
I think many of us will one day have this duty.
To my way of thinking, the really serious questions relating to euthanasia
and assisted suicide are: Who would be better off dead? Who has a duty
to die?
When is the right time to die? And if my life should be
over, who should kill me?[1] However, I know that others find much of what
I have said here surprising, shocking, even morally offensive. So before
turning to these questions that I want us to think about, I need to explain
why I think someone can be better off dead and why someone can have a duty
to die. (The explanation of the latter will have to be longer, since it
is by far the less familiar and more controversial idea.)
WHEN SOMEONE WOULD BE BETTER OFF DEAD
Others have discussed euthanasia or physician-assisted suicide
when the patient would be better off dead.[2] Here I wish to emphasize
two points often omitted from discussion: 1) Unrelieved pain is not the
only reason someone would be better off dead. 2) Someone can be better
off dead even if she has no terminal illness.
1) If we think about it for even a little while, most of us can come
up with a list of conditions under which we believe we would rather be
dead than to continue to live. Severe and unrelieved pain is one item on
that list. Permanent unconsciousness may be another. Dementia so severe
that we no longer recognize ourselves or our loved ones is yet another.
There are some people who prefer not to live with quadriplegia. A future
shaped by severe deterioration (such as that which accompanies MS, ALS,
AIDS, or Huntington's chorea) is a future that some people prefer not to
live out.
(Our lists would be different because our lives and values are different.
The fact that some people would not or do not want to live with quadriplegia
or AIDS, for example, does not mean that others should not want to live
like that, much less that their lives are not worth living. That is very
important. The point here is that almost all of us can make a list of conditions
under which we would rather not live and that uncontrolled pain is not
the only item on most of our lists.)
Focusing the discussion of euthanasia and assisted suicide on pain ignores
the many other varieties of suffering that often accompany chronic illness
and dying: dehumanization, loss of independence, loss of control, a sense
of meaninglessness or purposelessness, loss of mental capabilities, loss
of mobility, disorientation and confusion, sorrow over the impact of one's
illness and death on one's family, loss of ability even to recognize loved
ones, and more. Often, these causes of suffering are compounded by the
awareness that the future will be even bleaker. Unrelieved pain is simply
not the only condition under which death is preferable to life, nor the
only legitimate reason for a desire to end one's life.
2) In cases of terminal illness, death eventually offers the dying person
relief from all her suffering. Consequently, things can be even worse when
there is
NO terminal illness, for then there is no end in sight.
Both pain and suffering are often much worse when they are
not accompanied
by a terminal illness. People with progressive dementia, for example, often
suffer much more if they are otherwise quite healthy. I personally know
several old people who would be delighted to learn that they have a terminal
illness. They feel they have lived long enough -- long enough to have outlived
all their loved ones and all sense of a purpose for living. For them, even
daily existence is much worse because there is no end in sight.
Discussions of euthanasia and physician-assisted suicide cannot, then,
be restricted to those with unrelieved pain and terminal illness. We must
also consider requests made by those who have no untreatable pain and no
terminal illness. Often, their case for relief is even more compelling.
Sometimes, a refusal of medical treatment will be enough to bring relief.
Competent adults who are suffering from an illness have a well-established
moral and legal right to decline any form of medical treatment, including
life-prolonging medical treatment. Family members who must make medical
decisions for incompetent people also have the right to refuse any form
of medical treatment on their behalf, so long as they are acting in accordance
with the known wishes or best interests of their loved one. No form of
medical treatment is compulsory when someone would be better off dead.[3]
But those who would be better off dead do not always have terminal illnesses;
they will not always need any form of medical treatment, not even medically-supplied
food and water. The right to refuse medical treatment will not help these
people. Moreover, death due to untreated illness can be agonizingly slow,
dehumanizing, painful, and very costly, both in financial and emotional
terms. It is often very hard. Refusing medical treatment simply will not
always insure a dignified, peaceful, timely death. We would not be having
a national debate about physician-assisted suicide and euthanasia if refusal
of medical treatment were always enough to lead to a reasonably good death.
When death comes too late, we may need to do more than refuse medical treatment.
RELIGION AND ENDING A LIFE
Some people can easily see that there are people who would be
better off dead. But they still cannot accept suicide or physician-assisted
suicide because they believe we have a duty to God not to take our own
lives. For them, human life is a gift from God and it remains a gift no
matter how much pain and suffering it may bring. It is a sin or an offense
against God, the giver of life, to take your own life or to help someone
else end theirs. Such believers may also feel that no one should be allowed
to end their lives -- every life is a gift from God, even the lives of
those who do not believe that this is so.
I don't understand this position for two reasons. First, it involves
the assumption that it is possible to take a human life (our own or someone
else's)
before God wants it ended, but we cannot possibly preserve
it
after God wants it ended. For if we do not make that assumption,
we face
two dangers -- the danger that we are prolonging human life
beyond its divine purpose, as well as the danger that we are ending it
too soon. If we can extend life longer than God intends, suicide and physician-assisted
suicide may be more in accord with God's wishes than attempts to preserve
that life.
I can understand the view that everyone dies at precisely the right
time, the moment God intends. If that is so, people who commit suicide
or who are intentionally killed by physicians also die at precisely the
moment God wants them to die. I can also understand the view that we can
take life before God wants it ended but we can also extend life longer
than God wants it prolonged. But I cannot make sense of the view that we
can end a human life too soon but not preserve it too long. Surely, God
has given us both abilities or neither one.
I also have a second difficulty with this religious objection to suicide,
assisted suicide and euthanasia. Suppose there is a right time to die,
a divinely-ordained moment when God wants each life to end. Even so, we
have no right to assume that God will "take my life" when it's the right
time for me to die. In fact, we cannot even assume that God will send a
terminal illness that will kill me at the right time. There could be a
religious test -- God may want me to take my own life and the question
is whether I will meet this final challenge. Or a God who loves me might
see that I would benefit spiritually from the process of coming to the
conclusion that I should end my own life and then preparing to take it.
That might be a fitting ending for me, the culminating step in my spiritual
growth or development.
In short, a God not totally obsessed with the sheer quantity of our
lives may well have purposes for us that are incompatible with longer life.
Even if we want to live longer. So, I think we should not believe that
we always have a duty to God not to take our lives or to assist others
in ending theirs. God may want me to step up and assume the responsibility
for ending my own life or for seeing that someone else's suffering is ended.
This observation leads to our next question, Can there be a responsibility
or duty to die?
THE DUTY TO DIE
I may well one day have a duty to die, a duty most likely to arise
out of my connections with my family and loved ones.[4] Sometimes preserving
my life can only devastate the lives of those who care about me. I do not
believe I am idiosyncratic, morbid or morally perverse in believing this.
I am trying to take steps to prepare myself mentally and spiritually to
make sure that I will be able to take my life if I should one day have
such a duty. I need to prepare myself; it might be a very difficult thing
for me to do.
Our individualistic fantasy about ourselves sometimes leads us to imagine
that lives are separate and unconnected, or that they could be so if we
chose. If lives were unconnected, then things that happen in my life would
not or need not affect others. And if others were not (much) affected by
my life, I would have no duty to consider the impact of my life on others.
I would then be morally free to choose whatever life and death I prefer
for myself. I certainly would have no duty to die when I would prefer to
live.
Most discussions of assisted suicide and euthanasia implicitly share
this individualistic fantasy: they just ignore the fact that people are
connected and lives intertwined. As a result, they approach issues of life
or death as if the only person affected is the one who lives or dies. They
mistakenly assume the pivotal issue is simply whether the person
herself
prefers not to live like this and whether
she herself would be better
off dead.[5]
But this is morally obtuse. The fact is we are not a race of hermits
-- most of us are connected to family and loved ones. We prefer it that
way. We would not want to be all alone, especially when we are seriously
ill, as we age, and when we are dying. But being with others is not all
benefits and pleasures; it brings responsibilities, as well. For then what
happens to us and the choices we make can dramatically affect the lives
of our loved ones. It is these connections that can, tragically, generate
obligations to die, as continuing to live takes too much of a toll on the
lives of those connected to us.[6]
The lives of our loved ones can, we know, be seriously compromised by
caring for us. The burdens of providing care or even just supervision 24
hours/day, 7 days/week are often overwhelming.[7] But it can also be emotionally
devastating simply to be married to a spouse who is increasingly distant,
uncommunicative, unresponsive, foreign and unreachable. A local newspaper
tells the story of a woman with Alzheimer's who came running into her den
screaming: "That man's trying to have sex with me! He's trying to have
sex with me! Who
IS that man?!" That man was her loving husband
of more than 40 years who had devoted the past 10 years of his life to
caring for her (Smith, 1995). How terrible that experience must have been
for her. But how terrible those years must be for him, too.
We must also acknowledge that the lives of our loved ones can also be
devastated just by having to
pay for health care for us. A recent
study documented the financial aspects of caring for a dying member of
a family. Only those who had illnesses severe enough to give them less
than a 50% chance to live six more months were included in this study.
When these patients survived their initial hospitalization and were discharged,
about 1/3 required considerable caregiving from their families, in 20%
of cases a family member had to quit work or make some other major lifestyle
change, almost 1/3 of these families lost all of their savings, and just
under 30% lost a major source of income (Covinski et al, 1994).
A chronic illness or debilitating injury in a family is a misfortune.
It is, most often, nobody's fault; no one is responsible for this illness
or injury. But then we face choices about how we will respond to this misfortune.
That's where the responsibility comes in and fault can arise. Those of
us with families and loved ones always have a responsibility not to make
selfish or self-centered decisions about our lives. We should not do just
what we want or just what is best for us. Often, we should choose in light
of what is best for all concerned.
Our families and loved ones have obligations to stand by us and to support
us through debilitating illness and death. They must be prepared to make
sacrifices to respond to an illness in the family. We are well aware of
this responsibility and most families meet it rather well. In fact, families
deliver more than 80% of the long-term care in this country, almost always
at great personal cost.
But responsibility in a family is not a one-way street. When we become
seriously ill or debilitated, we too may have to make sacrifices. There
are limits to what we can ask our loved ones to do to support us, even
in sickness. There are limits to what they should be prepared to do for
us -- only rarely and for a limited period of time should they do all they
can for us.
Somehow we forget that sick, infirm, and dying adults also have obligations
to their families and loved ones: a responsibility, for example, to try
to protect the lives of loved ones from serious threats or greatly impoverished
quality, or an obligation to avoid making choices that will jeopardize
or seriously compromise their futures. Our obligations to our loved ones
must be taken into consideration in making decisions about the end of life.
It is out of these responsibilities that a duty to die can develop.
Tragically, sometimes the best thing you can do for your loved ones
is to remove yourself from their lives. And the only way you can do that
may be to remove yourself from existence. This is not a happy thought.
Yet we must recognize that suicides and requests for assisted suicide may
be motivated by love. Sometimes, it's simply the only loving thing to do.
WHO HAS A DUTY TO DIE?
Sometimes it is clear when someone has a duty to die. But more
often, not.
WHO has a duty to die? And
WHEN -- under what
conditions? To my mind, these are the right questions, the questions we
should be asking. Many of us may one day badly need answers to just these
questions.
But I cannot supply answers here, for two reasons. In the first place,
answers will have to be very particular and individualized . . . to the
person, to the situation of her family, to the relationships within the
family, etc. There will not be simple answers that apply to everyone.
Secondly and perhaps even more importantly, those of us with family
and loved ones should not define our duties unilaterally. Especially not
a decision about a duty to die. It would be isolating and distance-creating
for me to decide without consulting them what is too much of a burden for
my loved ones to bear. That way of deciding about my moral duties is not
only atomistic, it also treats my family and loved ones paternalistically
--
THEY must be allowed to speak for themselves about the burdens
my life imposes on them and how they feel about bearing those burdens.
I believe in family decision making. Important decisions for those whose
lives are interwoven should be made
together, in a family discussion.
Granted, a conversation about whether I have a duty to die would often
be a tremendously difficult conversation. The temptations to be dishonest
in such conversations could be enormous. Nevertheless, if we can, we should
have just such an agonizing discussion. Partly because it will act as a
check on the information, perceptions and reasoning of all of us. But perhaps
even more importantly, because it affirms our connectedness at a critical
juncture in our lives. Honest talk about difficult matters almost always
strengthens relationships.
But many families seem to be unable to talk about death at all, much
less a duty to die. Certainly most families could not have this discussion
all at once, in one sitting. It might well take a number of discussions
to be able to approach this topic. But even if talking about death is impossible,
there are always behavioral clues -- about your caregiver's tiredness,
physical condition, health, prevailing mood, anxiety, outlook, over-all
well-being etc. And families unable to talk about death can often talk
about those clues. There can be conversations about how the caregiver is
feeling, about finances, about tensions within the family resulting from
the illness, about concerns for the future. Deciding whether you have a
duty to die based on these behavioral clues and conversation about them
is more relational than deciding on your own about how burdensome this
relationship and care must be.[8]
For these two reasons, I cannot say when someone has a duty to die.
But I can suggest a few ideas for discussion of this question. I present
them here without much elaboration or explanation.
1) There is more duty to die when prolonging your life will impose greater
burdens -- emotional burdens, caregiving, disruption of life plans, and,
yes, financial hardship -- on your family and loved ones. This is the fundamental
insight underlying a duty to die.
2) There is greater duty to die if your loved ones' lives have already
been difficult or impoverished (not just financially) -- if they have had
only a small share of the good things that life has to offer.
3) There is more duty to die to the extent that your loved ones have
already made great contributions -- perhaps even sacrifices -- to make
your life a good one. Especially if you have not made similar sacrifices
for their well-being.
4) There is more duty to die to the extent that you have
already
lived a full and rich life. You have already had a full share of the good
things life offers.
5) Even if you have not lived a full and rich life, there is more duty
to die as you grow older. As we become older, there is a diminishing chance
that we will be able to make the changes that would now be required to
turn our lives around. As we age, we will also be giving up less by giving
up our lives, if only because we will sacrifice fewer years of life.
6) There is less duty to die to the extent that you can make a good
adjustment to your illness or handicapping condition, for a good adjustment
means that smaller sacrifice will be required of loved ones and there is
more compensating interaction for them. (However, we must also recognize
that some diseases -- Alzheimer's or Huntington's chorea -- will eventually
take their toll on your loved ones no matter how courageously, resolutely,
even cheerfully you manage to face that illness.)
7) There is more duty to die to the extent that the part of you that
is loved will soon be gone or seriously compromised. There is also more
duty to die when you are no longer capable of giving love. Part of the
horror of Alzheimer's or Huntington's, again, is that it destroys the person
we loved, leaving a stranger and eventually only a shell behind. By contrast,
someone can be seriously debilitated and yet clearly still the person we
love.
In an old person, "I am not ready to die yet" does not excuse one from
a duty to die. To have reached the age of, say, 80 years without being
ready to die is itself a moral failing, the sign of a life out of touch
with life's basic realities.
A duty to die seems very harsh, and sometimes it is. But if I really
do care for my family, a duty to protect their lives will often be accompanied
by a deep desire to do so. I will normally
want to protect those
I love. This is not only my duty, it is also my desire. In fact, I can
easily imagine wanting to spare my loved ones the burden of my existence
more than I want anything else.
IF I SHOULD BE DEAD, WHO SHOULD KILL ME?
We need to reframe our discussions of euthanasia and physician-assisted
suicide. For we must recognize that pleas for assisted suicide are sometimes
requests for relief from pain and suffering, sometimes requests for help
in fulfilling one's obligations, and sometimes both. If I should be dead
for either of these reasons, who should kill me?
Like a responsible life, a responsible death requires that we think
about our choices in the context of the web of relationships of love and
care that surround us. We must be sensitive to the suffering as well as
the joys we cause others, to the hardships as well as the benefits we create
for them. So, when we ask, who should kill me?, we must remember that we
are asking for a death that will reduce the suffering of
both me
and my family as much as possible. We are searching for the best ending,
not only for me, but for
everyone concerned -- in the preparation
for death, the moment of death, and afterwards, in the memory and on-going
lives of loved ones and family.
Although we could perhaps define a new profession to assist in suicides
-- euthanasians?? -- there are now really only three answers to the question,
Who should kill me? 1) I should kill myself. 2) A loved one or family member
should kill me. 3) A physician should kill me. I will consider these three
possibilities. I will call these
unassisted suicide,
family-assisted
suicide, and
physician-assisted suicide.
1) UNASSISTED SUICIDE: I SHOULD KILL MYSELF
The basic intuition here is that each of us should take responsibility
for herself. I am primarily the one who wants relief from my pain and suffering,
or it is fundamentally my own duty to die and
I should be the one
to do my duty. Moreover, intentionally ending a life is a very messy business
-- a heavy, difficult thing for anyone to have to do. If possible, I should
not drag others into it. Often, I think, this is the right idea -- I should
be the one to kill myself.
But not always. We must remember that some people are physically unable
to do so -- they are too weak or incapacitated to commit suicide without
assistance. Less persuasive perhaps are those who just can't bring themselves
to do it. Without the assistance of someone, many lack the know-how or
means to end their lives in a peaceful, dignified fashion. Finally, many
attempted suicides -- even serious attempts at suicide -- fail or result
in terrible deaths. Those who have worked in hospitals are familiar with
suicide attempts that leave people with permanent brain damage or their
faces shot off. There are also fairly common stories of people eating their
own vomit after throwing up the medicine they hoped would end their lives.
Even more importantly, if I must be the one to kill myself, that may
force me to take my life earlier than would otherwise be necessary. I cannot
wait until I become physically debilitated or mentally incompetent, for
then it will be too late for me to kill myself. I might be able to live
quite comfortably for a couple more years, if I could count on someone
else to take my life later. But if I can not count on help from anyone,
I will feel pressure to kill myself when unavoidable suffering for myself
or my loved ones appears on the horizon, instead of waiting until it actually
arrives.
Finally, many suicides are isolating -- I can't die with my loved ones
around me if I am planning to use carbon monoxide from automobile exhaust
to end my life. For most of us, a meaningful end of life requires an affirmation
of our connection with loved ones and so we do not want to die alone.
The social taboo against ending your own life promotes another type
of isolation. The secrecy preceding many suicides creates conditions for
misunderstanding or lack of understanding on the part of loved ones --
Why did she do it?, Why didn't I see that she was going to kill herself?,
Why didn't I do something to help? Secrecy and lack of understanding often
compound the suffering family and loved ones go through when someone ends
their life.
Unassisted suicide -- I should kill myself -- is not, then, always the
answer. Perhaps, then, my loved ones should participate in ending my life.
2) FAMILY-ASSISTED SUICIDE: A MEMBER OF MY FAMILY SHOULD KILL ME
At times, we may have a moral obligation to help others end their
lives, especially those close to us, those we love. I can easily imagine
myself having an obligation to help a loved one end her life and I hope
my family will come to my assistance if my death does not come at the right
time. What should be the role of family and loved ones in ending a life?
They might help me get information about reliable and peaceful methods
for ending my life. They might also be able to help me get the drugs I
need, if that is the method I choose. Like most people, I would also very
much want my loved ones to participate, at least to the extent of being
there with me when I die.
For reasons already mentioned, I would hope I could talk over my plans
with my loved ones, both to reassure myself and check on my reasoning,
and also to help them work through some of the emotional reaction to my
death. Some people believe that families should not be involved in decisions
about the end of life because they are in the grips of powerful emotions
that lead to wildly inappropriate decisions. (A familiar example is the
difficulty many families have in deciding to withdraw medical treatment
even when their loved one is clearly dying.) Families will always be gripped
by powerful emotions over a death in the family. But appropriate decisions
are not necessarily unemotional or uninvolved decisions. And I think inappropriate
reactions or decisions stem largely from lack of the discussions I advocate
or from an attempt to compress them into one, brief, pressure-packed conversation,
often in the uncomfortable setting of a hospital.
So, a good death for all concerned would usually involve my family --
the preparation for taking my life, at least, would be family-assisted.
My loved ones should know; they should, if possible, understand. They should
not be surprised. Hopefully my loved ones could come to agree with my decision.
They should have had time to come to terms with the fact that I plan to
end my life. Indeed, I should have helped them begin to deal emotionally
with my death. All that would help to ease their suffering and also my
concern about how my death will affect them. It would reaffirm our connectedness.
It would also comfort me greatly to feel that I am understood and known
by my loved ones as I take this important step.
More than this I cannot ask of them, for two related reasons. The first
is that actually killing a loved one would usually be extremely difficult.
It would be a searing and unforgettable experience that could well prove
very hard to live with afterwards. Killing a loved one at her request
might
leave you feeling relieved -- it could give you the satisfaction of feeling
you had done what needed to be done. In cases of extreme debility or great
suffering, family-assisted suicide might be experienced as a loving act
of kindness, compassion and mercy. It would still be very hard. Much harder
would be killing me because I have a duty to die, a duty to die because
my life is too great a burden
for the one who now must kill me.
I cannot ask that of someone I love. I fear that they would suffer too
much from taking my life.
I might be wrong about this, however, It might be that, though difficult
indeed, being killed lovingly and with your consent by your spouse or your
child would be a final testimonial to a solid, trusting, and caring relationship.
There might be no more powerful reaffirmation of the strength of your relationship,
even in the face of death. The traumatic experience for the family members
who assist in the suicide might be a healing experience for them, as well.
We know so little about family-assisted suicide.
But in any case, there is also a second reason: I cannot ask for family-assisted
suicide because it is not legally protected -- a loved one who killed me
might well be charged with murder. I could not ask my family to subject
themselves to such a risk. Moreover, unlike physician-assisted suicide,
we would not want to legalize family-assisted suicide. The lives of families
are just too complex and too often laced with strong negative emotions
-- guilt, resentment, hatred, anger, desire for revenge. Family members
also often have multiple motives stemming from deeply conflicting interests.
As a result, there would be just too many cases in which family-assisted
suicide would be indistinguishable from murder.[9]
Finally, family members may also fail. They also may lack know-how or
bungle the job. Caught in the compelling emotions of grief and/or guilt,
they may be unable to end a life that should be ended.
All this notwithstanding, family-assisted suicide may be the right choice,
especially if physician-assisted suicide is unavailable. But should it
be unavailable?
3) PHYSICIAN-ASSISTED SUICIDE: MY DOCTOR SHOULD KILL ME
There are, then, important difficulties with both unassisted suicide
and family-assisted suicide. These difficulties are arguments for physician-assisted
suicide and euthanasia. If my death comes too late, a physician is often
the best candidate to kill me. . . or at the very least, to help me kill
myself.
Perhaps the main argument for physician-assisted suicide grows out of
physician's extensive knowledge of disease and of dying. If it is a medical
condition that leads me to contemplate ending my life, a key question for
determining
when or even
whether I should end my life is,
What is the prognosis? To what extent can my illness be treated or at least
alleviated? How long do I have to live with my condition? How much worse
will it get and how soon? What will life with that condition be like for
me and my family? Few besides physicians possess all this critical information.
I will be more likely to reach the right decision at the right time if
a trusted physician is in on my plans to end my life.
A related point is physicians' knowledge of and access to drugs. Few
of us know what drugs to take and in what amounts without the advice of
a physician. Often, only a physician will know what to do to insure that
I do not vomit up the "suicide pill" or what to do if it fails. Physicians
also have a monopoly on access to drugs. If my physician were more closely
involved in the process, I could be more certain -- and thus reassured
-- that my death will be peaceful and dignified, a death that permits reaffirmation
of my connections with family and close friends.
A second argument for physician-assisted suicide grows out of physicians'
greater experience with death and dying. Physicians know what to expect;
those of us outside the health professions often do not. Granted, few physicians
nowadays will know
me and
my family. For this reason, physicians
should seldom make unilateral decisions about assisted suicide. Still,
most physicians could provide a rich source of information about death
and about strategies to minimize the trauma, suffering, and agony of a
death, both for the dying person and for the family.
Third, physician-assisted suicide does not carry the same social stigma
that unassisted suicide carries and physicians are not exposed to the legal
risks involved in family-assisted suicide. Although many physicians are
unwilling to take
any risks to help someone end her life, there
is really very little legal risk in physician-assisted suicide, especially
if the family is in agreement. Physicians are also not morally censored
the way family members would be for ending a life.
Finally, physicians ought not to abandon their patients, certainly not
at the moment of death. Much has been made of the possibility that Americans
would lose their trust in physicians if they knew that physicians sometimes
kill. But many of us would trust our physicians
more if we knew
that we could count on them when death is needed or required (Quill &
Cassell, 1995).
We have come, then, by a very round-about route to another argument
for
physician-assisted suicide. Often it is simply better -- safer,
more secure, more peaceful, less emotionally-damaging for others -- than
unassisted suicide or family-assisted suicide. If physicians refuse to
assist or are not permitted to do so, families and seriously ill people
will be forced back on their own resources. And many deaths will be much
worse than they need to be. When death comes too late, a physician will
often be the best candidate to kill me.
And yet, physician-assisted suicide is not always the answer, either.
Many physicians take themselves to be sworn to preserve human life in all
its forms. Also, many people want doctors who are sworn not to kill, for
fear that physicians might start making presumptuous, single-handed decisions
about when death comes too late. Moreover, in a time when most people lack
a significant personal relationship with their physicians, physician-assisted
suicide is often a death that is remote, isolated, disconnected from the
relationships that gave meaning to life. It is not always the best death.
At times, then, family-assisted suicide and unassisted suicide remain the
best answers.
CONCLUSION
We have a long cultural tradition of attempts to deal with the
problems of death that comes too soon. Modern medicine, with its dramatic
high-tech rescue attempts in the ER and the ICU, is our society's attempt
to prevent death from coming too soon. On a more personal level, we are
bombarded with advice about ways to avoid a death that would be too soon
-- sooner than we wished, before we were ready for it.
We have much less cultural wisdom about the problems of a death that
comes too late. It's almost as if we had spent all our cultural resources
trying to avoid deaths that come too soon, only to find that we then had
no resources left to help us when death comes too late.
Deaths that come too soon usually raise no difficult moral problems,
however difficult they may be in other ways. Such deaths normally occur
despite our best attempts to prevent them. "There's nothing more we can
do" we say to the dying person, her family, and ourselves. And there is
ethical solace in this, despite the tragedy of the death itself. We admit
our failure. But our failure is not a moral failure -- we did what we could.
Deaths that come too late are ethically much more troubling. They call
on us to assume responsibility -- to make difficult decisions and to do
difficult things. We can try to hide from this responsibility by claiming
that we should always try to prolong life, no matter what. Or by not deciding
anything. But we know that not to decide is to decide. And it is very often
just not clear what we should do. The weight of life-or-death decision
pushes down upon us.
The recognition that the lives of members of families are intertwined
makes the moral problems of a death that comes too late even more difficult.
For they deprive us of our easiest and most comfortable answers -- "it's
up to the individual," "whatever the patient wants." But we do know that
measures to improve or lengthen one life often compromise the quality of
the lives of those to whom that person is connected.
So, we are morally troubled by deaths that come too late. We don't know
what to do. Beyond that, the whole idea is unfamiliar to us. But in other
societies -- primarily technologically primitive and especially nomadic
societies -- almost everyone knew that death could come too late. People
in those cultures knew that if they managed to live long enough, death
would come too late and they would have to do something about it. They
were prepared by their cultural traditions to find meaning in death and
to do what needed to be done.
We have largely lost those traditions. Perhaps we have supposed that
our wealth and technological sophistication have purchased exemption for
us from any need to worry about living too long, from any need to live
less than every minute we enjoy living. For awhile it looked that way.
But we must now face the fact: deaths that come too late are only the other
side of our miraculous modern medicine.
We have so far avoided looking at this dark side of our medical triumphs.
Our modern medicine saves many lives and enables us to live longer. That
is wonderful, indeed. But it thereby also enables more of us to survive
longer than we are able to care for ourselves, longer than we know what
to do with ourselves, longer than we even
are ourselves. Moreover,
if further medical advances wipe out many of today's "killer diseases"
-- cancers, AIDS, heart attacks, strokes, etc. -- then most of us will
one day find that death has come too late. And there will be a very common
duty to die. This is only the other side of our wonderful life-prolonging
medicine.
Our political system and health care reform (in the U.S.A.) are also
moving in a direction that will put many more of us in the position of
having a duty to die. Measures designed to control costs (for the government,
and for employers who pay for retirement benefits and health insurance)
often switch the burdens of care onto families. We are dismantling our
welfare system and attempting to shift the costs of long-term health care
onto families. One important consequence of these measures is that more
of us will one day find ourselves a burden to our families and loved ones.[10]
Finally, we ourselves make choices that increase the odds that death
will come too late. Patient autonomy gives us the right to make choices
about our own medical treatment. We use that right to opt again and again
for life-prolonging treatment -- even when we have chronic illnesses, when
we are debilitated, and as we begin to die. Despite this autonomy, we may
feel we really have no choice, perhaps because we are unable to find meaning
in death or to bring our lives to a meaningful close. But if we repeatedly
opt for life-prolonging treatment, we thereby also increase the chances
that death will come too late. This is the cost of patient autonomy, combined
with powerful life-prolonging medical technology and inability to give
meaning to death or even to accept it.
Death is very difficult for us. I have tried here to speak about it
in plain language; I have used hard words and harsh tones to try to make
us attend to troubling realities. We may question the arguments and conclusions
of this paper. We should do so. But this questioning must not be fueled
by denial or lead to evasion. For one thing seems very clear: we had better
start learning how to deal with the problems of a death that comes too
late. Some day, many of us will find that we should be dead or that one
of our loved ones should be dead. What should we do then? We had better
prepare ourselves -- mentally, morally, culturally, spiritually, and socially.
For many of us, if we are to die at the right time, it will be up to us.
BIBLIOGRAPHY
Beauchamp, T.L., ed.:
Intending Death: The Ethics of Assisted Suicide
and Euthanasia (Prentice-Hall, 1996).
Brody, Elaine M.:
Women in the Middle: their Parent-Care Years
(New York: Springer Publishing Co., 1990).
Covinsky, Kenneth E., Goldman, Less, et al.: 'The impact of serious
illness on patients' families'
JAMA 272 (1994), 1839-1844.
Hardwig, John: 'What about the family?',
Hastings Center Report
20 (March/April 1989), 5-10.
Hardwig John: 'The problem of proxies with interests of their own: toward
a better theory of proxy decisions',
The Journal of Clinical Ethics
4 (Spring 1993), 20-27.
Moreno, Jonathan, ed.:
Arguing Euthanasia, (New York: Simon &
Schuster, 1995).
Quill, Timothy E. and Cassell, Christine K.: 'Nonabandonment: a central
obligation for physicians'
Annals of Internal Medicine 122 (1995),
368-74.
Rachels, James: 'Active and passive euthanasia,'
New England Journal
of Medicine 292 (1975), 78-80.
Smith, V.P. [pen name of Val Pendergrast]: 'At home with Alzheimer's'
Knoxville Metro Pulse 5, no. 30 (1995), 7, 27.
FOOTNOTES
* I get by with a little help from my friends. I wish to thank Hilde
and Jim Nelson, Mary English, Tom Townsend, and Hugh LaFollette for helpful
comments on earlier versions of this paper. And more: these friends have
been my companions and guides throughout my attempt to think through the
meaning of love and family in our lives.
[1] A note about language: I will be using "responsibility," "obligation"
and "duty" interchangeably, despite significant differences in meaning.
I generally use the word "duty" because it strikes me as a hard word for
what can be a hard reality. (It also echoes Richard Lamm's famous statement:
"Old people have a duty to die and get out of the way to give the next
generation a chance.") Similarly, I use "kill" despite its connotations
of destruction because I think we should not attempt to soften what we
are doing. War and capital punishment have already taught us too much about
how to talk in sweet and attractive ways about what we do. So I have resisted
talking about "bringing my life to a close" and similar expressions. Have
tried to use the plain, hard words.
[2] There are many articles on this topic. Perhaps the classic article
is Rachels (1975). It has been widely reprinted. A good collection of articles
can be found in The Journal of Medicine and Philosophy (June, 1993)
which was devoted to the topic, "Legal Euthanasia: Ethical Issues in an
Era of Legalized Aid in Dying." Recent anthologies include Beauchamp (1996)
and Moreno (1995).
[3] A few states in the U.S. -- currently (1/96) New York, Missouri,
Delaware, and Michigan -- do require that family members be able to supply
"clear and convincing evidence" that withdrawal of treatment is what their
loved one would have wanted. This can be hard to prove. So it is especially
important for those who live in these states to put their wishes about
the kind of treatment they would want (if they become unable to decide
for themselves) in writing. For information about the laws that apply in
your state, write to Choice in Dying, 200 Varick Street, New York, NY 10014
or call them at 212-366-5540.
[4] I believe we may also have a duty to ourselves to die, or a duty
to the environment or a duty to the next generation to die. But I think
for most of us, the strongest duty to die comes from our connections to
family and loved ones, and this is the only source of a duty to die that
I will consider here.
[5] Most bioethicists advocate a "patient-centered ethics" -- an ethics
which claims only the patient's interests should be considered in making
medical treatment decisions. Most health care professionals have been trained
to accept this ethic and to see themselves as patient advocates. I have
argued elsewhere that a patient-centered ethic is deeply mistaken. See
Hardwig (1989) and Hardwig (1993).
[6] I am considering only mentally competent adults. I do not think
those who have never been competent -- young children and those with severe
retardation -- can have moral duties. I do not know whether formerly competent
people -- e.g., those who have become severely demented -- can still have
moral duties. But if they cannot, I think some of us may face a duty to
die even sooner -- before we lose our moral agency.
[7] A good account of the burdens of caregiving can be found in Brody
(1989). To a large extent, care of the elderly is a women's issue. Most
people who live to be 75 or older are women. But care for the elderly is
almost always provided by women, as well -- even when the person who needs
care is the husband's parent.
[8] Ultimately, in cases of deep and unresolvable disagreement between
yourself and your loved ones, you may have to act on your own conception
of your duty and your own conception of the burdens on them. But that's
a fall-back position to resort to when the better, more relational ways
of arriving at a belief in a duty to die fail or are unavailable.
[9] Although this is true, we also need to rethink our reactions to
the motives of the family. Because lives are intertwined, if someone "wants
Dad to be dead" and is relieved when he dies, this does not necessarily
mean that she did not genuinely love him. Or that she is greedy, selfish,
or self-centered. Her relief may stem from awareness of his suffering.
It could also grow out of recognition of the sad fact that his life was
destroying the lives of other family members whom she also loved.
[10] Perhaps a more generous political system and a more equitable health
care system could counteract the trend toward a more and more common duty
to die. For now, at least, we could pay for the care of those who would
otherwise be a burden on their families. If we were prepared to do so,
far fewer would face a duty to die. But we (in the U.S., at least) are
not prepared to pay. Moreover, as medical advances enable more people to
live longer (though also in various states of disability), it may be that
the costs would overwhelm any society. Even if we could afford it, we should
not continue to try to buy our way out of the problems of deaths that come
too late. We would be foolish to devote all our resources to creating a
society dedicated solely to helping all of us live just as long as we want.
