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Reflections On Death In America

A speech given by George Soros on November 30, 1994 
for the Alexander Ming Fisher Lecture Series at 
Columbia Presbyterian Medical Center
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I am somewhat embarrassed giving this speech because I am not an
expert on dying.  Many people connected with my Project on Death in
America are much more qualified to talk about dying than I am.  But there
seems to be a kind of strange attraction on the part of professionals and
academics to hear from men of the world like myself -- businessmen, the
doers, the actors on the public stage.  At the same time, of course, many
businessmen have an exaggerated esteem for academics.  And I may well be
one of them.  So I approach this audience with some trepidation. <p>

The first question I must answer, why have I sponsored a Project on
Death in America.  There are two reasons: one is very abstract, the other
very personal. 

The abstract motivation derives from a basic insight which has been
at the root of both my money-making and my philanthropic activities and
which I have elaborated into a not-yet-properly-understood philosophical
theory.  The insight is that there is always a divergence between the
views and ideas that guide people in their actions and the actual state of
affairs.  I call the divergence the participants bias.  Since the
participants actions help shape reality, there is a two-way feedback
mechanism between the participants bias and the events in which they
participate. I call this two-way feedback reflexivity. 

Sometimes the participants bias is quite small and there are forces
at play which tend to bring the participants views and the actual state of
affairs closer together.  But at other times the bias can be quite
enormous without any tendency to correct itself.  On the contrary, the
two-way feedback mechanism may help validate and reinforce the bias until
the situation becomes untenable and there is a reversal in the
self-reinforcing process. 

Everybody has experienced such far-from-equilibrium situations in
his life, but I have specialized in them.  I lived through Nazi
persecution in Hungary as an adolescent; then I had a taste of communism
and when I went to England I cam under the influence of Karl Popper, the
philosopher of science, and began to develop my theory of reflexivity. 
When I became involved in the financial markets I specialized on boom/bust
sequences and did rather well out of them.  And when I made more money
than I could use for my personal needs I set up a foundation devoted to
the idea of an open society.  Without going too deeply into it, open
society is based on the principle that we all act on imperfect knowledge
and nobody is in possession of the ultimate truth.  A society based on the
recognition that we may be wrong is preferable to a society which denies
that its leaders may be wrong. 

I set up foundations which tried to help open up closed societies
and I become rather intimately involved in the revolutionary process which
led from one kind of far-from-equilibrium situation to another; from the
rigidity of the Soviet System to the chaos of its collapse.  For the last
five years, I have been very busy because one can do many things in the
heat of the revolutionary moment which would be impossible in normal
times, but as the revolution began to cool off I began to think what I
could do to make our own open society more viable; because according to my
theory, open societies also suffer from deficiencies which need to be
recognized and corrected for open societies to remain viable.  I focused
on two problem areas where misconceptions played a particularly important
role, making the problems worse than they would be if they were better
understood. 

One is the problem of dying which I will talk about tonight.  The 
other is the problem of drugs where the remedy is worse than the disease.

Due to our imperfect understanding, our actions have unintended 
consequences.  Nowhere are they more glaring than in the war on drugs.  
By treating drug abuse as a crime we have created crime, corruption and 
violence which are much more destructive than drug abuse by itself.  I 
should like to see the false identification between drug and crime broken 
without necessarily advocating the legalization of drugs.  A third 
problem area  I should like to do something about, but I dont yet know 
how, is the distortion of our electoral process by the excessive use of 
TV advertising.  All three areas have one thing in common:  Distortions 
and misconceptions aggravate the problem.

I chose the problem of dying as one of the areas because of some very 
personal experiences in connection with the death of my parents, both of 
whom I was very devoted to and loved dearly.

My father died at home in 1963.  He was terminally ill.  Although
he agreed to an operation, he didnt particularly want to survive it
because he was afraid that the combination of the illness and the
operation would invade and destroy his autonomy as a human being. 
Unfortunately, that in fact is what happened.  After the operation he had
very little time left.  Im afraid I kind of wrote him off at that point. 
I was there when he died, yet I let him die alone.  I could see him, but I
wasnt at his bedside.  The day after he died I went into the office.  I
didnt talk about my fathers death.  So I kind of denied hi dying, I
certainly didnt participate in it.  Afterwards, I read Kubler-Ross and
learned that I might have maintained contact with him if I tried.  Had I
read Kubler-Ross earlier I would have probably held his hand, because I
did love him.  I just didnt know that it might make a difference.  I
forgave myself because I did not know any better. 

My mothers death was more recent.  She had joined the Hemlock Society 
and had at hand a means of doing away with herself.  I asked her if she 
needed my help; I offered it, although I wasnt particularly keen to do 
it.  But I would have helped her because I felt that I owed it to her.  
At the point of decision, however, she did not want to take her own life, 
and I'm glad she didn't.  Her decision gave the family a chance to rally 
around and be there as she prepared to die.  And this time we did 
maintain good contact right to the end.

She had this experience, which is described in Kubler-Ross, of
walking up to the gates of heaven, and I was accompanying her.  She told
me she was worried that she might drag me with her.  So I reassured her
that I was firmly ensconced on this earth and she should not worry.  Her
dying was really a very positive experience for all of us because of the
way she handled herself and the way the family, not just me but
particularly my children, could participate in it.

These two personal experiences made me realize that there is a need
to better understand the experience of dying.  In my initial research in
the issue I was assisted by a friend, Patricia Prem, who as a social
worker had dealt professionally with dying.  She brought together the
people who helped create the Project on Death in America.  She is on the
Projects advisory board now, as are:

* Susan Block of Harvard Medical School
* Robert Burt of Yale Law School
* Robert Butler of Mt. Sinai
* Joanne Lynn of George Washington University
* Velvet Miller of the New Jersey State Department of Human Resources
* David Rothman of Columbias College of Physicians and Surgeons
* Attorney William D. Zabel
* Kathleen M. Foley who is the chief of pain service at the Memorial 
  Sloan-Kettering Cancer Center and Director of the Project on Death in 
  America.

The mission of the Project is to promote a better understanding of
the experiences of dying and bereavement and by doing so help transform
the culture surrounding death.  To do this, the Project will support
initiatives in research, scholarship, the humanities and the arts, as well
as innovations in the provision of care, public education, professional
education, and public policy.  I have committed $5 Million a year to the
Projects work for the first three years.  The board has decided to use the
money in two ways: by developing its own programs and by holding itself
open for grant applications. 

The first major program is to establish a number of faculty 
scholarships.  We hope to identify outstanding faculty and clinicians who 
are committed to the Projects goals and to support them in their work of 
developing new models for the care of the dying and new approaches to the 
education of health professionals about the care of dying patients and 
their families.  The scholars, who will receive two- to three-year 
fellowships for projects that explore critical aspects of the care of the 
dying, will become the academic leaders on this issue, the role models, 
and mentors to future generations of health professionals.  Each year the 
project will select ten faculty scholars.  In three years we will have a 
leader and role model in place in one-fourth of the countrys medical 
schools.

In opening up for grant applications our areas of interest are
broad enough to cover every aspect of the culture of dying.  They include
the epidemiology, ethnography, and history of dying and bereavement in the
U.S.; the physical, emotional, spiritual, and existential components of
dying and bereavement; new service-delivery models for the dying and their
family and friends; separate educational programs for the public and the
health care professionals; and the shaping of governmental and
institutional policy.  Personally I hope that the ratio between research
and action will be heavily weighed toward action. 

Now, let us look briefly at what we want to transform and why.  We
will begin with a small matter, the name of our project.  It took a
considerable amount of discussion to rid ourselves of clever euphemisms
and settle on a name that states our purpose directly, even starkly: the
Project on Death in America.  In America, the land of perpetually young,
growing older is an embarrassment, and dying is a failure.  Death has
replaced sex as the taboo subject of our times.  People compete to appear
on talk shows to discuss the most intimate details of their sex lives, but
they have nothing to say about dying, which in its immensity dwarfs the
momentary pleasures of sex.  Only our preoccupation with violence breaks
through this shroud of silence.  Killing yes; dying no. 

Even doctors, especially doctors, dont like to think about death.  A 
recent federal pamphlet for physicians on HIV infection never even 
mentions that AIDS is a fatal disease.  It recommends making arrangements 
for the care of the children when the patient becomes sick, but says 
nothing about the need for long-term plans for when the patient dies.  It 
is easier to find descriptions of the way people die and what can be done 
to ease their death in the medical textbooks of the turn-of-the-century 
than in todays voluminous literature on the treatment and cure of 
diseases.

This emphasis on treating disease, instead of providing care, has
altered the practice of medicine.  People live longer, surviving four or
five illnesses before dying.  But the health care bill grows with every
illness.  Our success has also brought other unintended consequences.  We
have created a medical culture that is so intent on curing disease and
prolonging life that it fails to provide support in that inevitable phase
of life -- death.  Advances in high technology interventions have
contributed to this weakness in our medical system, deluding doctors and
patients alike into believing that the inevitable can be delayed almost
indefinitely. 

The reality of death and the perceptions of the participants -- the
dying person, the doctor, the family members -- are separated by a wide
gap.  We need to bring the two into closer alignment.  Doctors who are on
a first-name basis with disease must re-acquaint themselves with the
patient.  They must recognize that, by focusing exclusively on conquering
disease and prolonging life, they abandon the dying when, in their own
words, there is nothing more to be done.  They must come to terms with
their own death in order to provide proper care for the dying. 

Eighty percent of people die in hospitals, yet, for most people,
hospitals are not a good place to die.  Hospitals are set up to take care
of acute illnesses, and dying is not an illness.  It doesnt belong to an
official medical category, it has no DRG that would permit reimbursement
for the hospital and the physician.  If you go to a hospital to die , the
doctors have to find something wrong with you, something to treat, like
pneumonia or dehydration, or they cannot admit you.  They hook you up to
tubes and machines and try to fix a condition that isnt fixable.  The need
to arrive at a reimbursable diagnosis changes the reality.  The doctors
and nurses are working to prolong life, instead of preparing a patient for
death.  The ideal of a peaceful death is impossible in such an alien
setting, under such extreme conditions. 

A peaceful death is more likely to be achieved at home in familiar
surroundings that are more conducive to the comfort and ritual of leave
taking from family and friends.  Both my parents died at home.  In my
mothers case, after I accompanied her to the gates of heaven and left her
in good hands, she lost consciousness and lingered for another seven to
ten days before dying.  I visited her regularly to see if there was any
sign of communication or consciousness, but there wasnt.  She died at
home, because we could afford to keep her there with round-the-clock
nurses attending to her.  We werent forced by lack of financial resources
to put her into a hospital where medical intervention may well have kept
her much longer in a state of limbo between living and dying.  Just by
giving her food, the process could have been unnecessarily prolonged. 

Only twenty percent of people die in their own home, in a nursing
home, or in a hospice.  Hospices offer the kind of palliative care that
should be routine procedure in every institution that cares for the dying. 
Proper care includes the control of pain and other symptoms as well as
attention to the psychological and spiritual needs of the patient.  To
provide this care, hospices employ teams of doctors, nurses, social
workers, and bereavement counselors.  But the hospice alternative,
unfortunately, is not available to the majority of dying patients. 
Medicare coverage is limited.  As a result, most hospice programs deliver
care to the dying in their own home, restricting custodial services to
only four hours a day.  This requires the presence of a family member who
doesnt work, who is physically able, and who is willing to assume the
responsibilities for care the rest of the time. 

The recommendations that follow from these observations are
obvious.  First and foremost, doctors, nurses, and other health
professionals need better training in the care of the dying, especially in
the relief of pain.  Health professionals also need training in
alleviating the psychological, emotional, and existential suffering that
may accompany dying.  Physical pain is what people fear most about dying. 
A dying person in pain cannot think about anything else, leaving no room
for coming to terms with death, for reviewing ones life, putting ones
affairs in order, for saying good-bye.  Therefore, pain relief must come
first.  Doctors often under medicate their dying patients for fear of turn
in them into drug addicts. 

Second, hospitals must be required to develop and adopt a
comprehensive DRG for terminal care.  This single change would go a long
ways toward removing the hypocrisy that now surrounds a hospitals
treatment of the dying and freeing doctors and nurses to provide the kind
of care that doesnt rely on technology -- such as the simple act of paying
attention to a dying person, holding their hand, listening, and comforting
them. 

Third, we must increase the availability of hospice services for
terminally ill patients removing restrictions on admittance and enhancing
reimbursement regulations.  We should consider laws that permit next of
kin to decide to forego life sustaining medical interventions even when a
patients wishes are not known.  The government may have to help family
members financially so that they can take care of dying persons at home by
the least expensive means.  These are only a few of the approaches to
transforming the culture of dying that our project will be exploring in
the months to come. 

How much will all this cost?  Can we afford to care for the dying
properly?  The number of people dying in the United States currently
stands at 2.2 million annually.  Increases in cancer and AIDS deaths and
the aging of the baby boomers will cause this figure to climb faster than
the population.  Today 1 in 8 Americans is 65 years or older.  In 30 to 40
years, 1 in 5 will be in that age group.  The average life expectancy for
those reaching age 65 is already 81 for men and 85 for women.  The fear is
that the dying of the elderly will drain the national treasury.  Like most
fears, this one is based on a myth, the popular perception that elderly,
terminally ill patients consume enormous amounts of resources shortly
before they die. 

It is true that nearly half of all medical expenses are incurred in
the last six months of peoples lives.  But it is also true that medical
expenditures in the last year of life are lower for people 80 years and
older than for those in younger age groups. 

Aggressive, life-prolonging interventions, which may at times go
against the patients wishes, are much more expensive than proper care for
the dying. 

This brings me to that hotly debated subject, physician-assisted
suicide and euthanasia.  This is the one aspect of dying that is talked
about everywhere -- on television, in public forums, in newspaper
headlines, and serious journal articles.  Voters in Oregon just approved a
law that makes it the first state to lift the prohibition against
physician-assisted suicide.

As the son of a mother who was member of the Hemlock Society, and
as a reader of Platos Phaedra, I cannot but approve.  But I must emphasize
that I am speaking in my personal capacity and not on behalf of the Board
of the Project on Death in America.  There are members of the Board who
take a different position and the Board as a whole wants to steer clear of
the issue because it feels it has plenty to do before opening that
Pandoras box.  Instead of getting embroiled in the debate on
physician-assisted suicide and euthanasia, they want to support the
training of health care professionals, enabling them to provide humane,
compassionate care to the dying, including improved physician-patient
communication, patient-centered care, better physician judgment on
withdrawing or withholding care, and familiarity with the principles and
practices of palliative care.

As founder of the project, I respect their judgment.  I believe in
personal autonomy; I believe people should be allowed to determine their
own end.  But I also recognize that legalizing euthanasia could have
unintended consequences, leading to all kind of abuses.  The issues need
to be carefully weighed, but I accept that this is not the first priority
of the Project.  Very few terminally ill patients would avail themselves
of the opportunity even if euthanasia were legalized.  After all, my
mother refused my help and I am glad she did.  The Project on Death in
America concerns itself with the vast majority of people who are not
looking for physician-assisted suicide and they have their work cut out
for them. 

In conclusion, let me tell you how I came to terms with my own
death -- a subject I gave a lot of thought to in my youth.  I spent years
thinking about it.  Building on my insight that there is always a
divergence between ideas and facts I came to the conclusion that it is the
idea of my death which I cannot accept because it is a total denial of my
consciousness.  The fact of dying, when it comes, may be much more
acceptable, especially if it comes at the end of a long life.  The insight
that the idea is not the same as the fact, made the idea more bearable.

I am sure that I would not find the argument persuasive if I had to 
confront the fact of my death here and now but as an idea I find it both 
convincing and comforting.  I wonder whether it has the same effect on 
you when you hear it for the first time.

As people come to terms with death, recognizing it as a fact of life, 
then the demand for physician-assisted suicide, as well as for 
unnecessary medical interventions, will drop.  That is one way I hope our 
efforts will influence the culture of dying.