How I Want to Die (My End of Life
I'm 56 years old. I might have 20 or 30 years left, but I
believe it's more like 10 or 15. Regardless, since any of us
could die at any time, I believe that it's time for me to consider how
I want to die. This is simply a practical matter for me, not
a gruesome one. We should each have a living will, and we
should be willing (and even eager) to discuss it. It is my
choice to die a natural death, with dignity, but I have placed
particular constraints on what I believe a natural death looks
like. I believe that there are things we can do to promote
dying in a healthy and sound way, and this kind of death looks much
different to me than what many people choose. There are three
aspects to my end-of-life strategy: spiritual, physical, and
the background, and just tell me how you want to die.)
Why are we so intent upon prolonging our own death or the deaths of our
loved ones alive? What's so bad about death anyway,
especially for believers? Why do we want to try to deny
death, which we cannot do? Do we really have the right to
interfere when we are moving from this life into the very presence of
God? Isn't it much worse to linger on this earth with neither
dignity nor quality of life? Sometimes, prolonging death just
means prolonging suffering, and this simply makes no sense to
me. Dying is just a part of living. God gives us
grace for living, and grace for dying.
We almost worship modern doctors, medicine, and technology, although
they seldom really provide any healing. They are too often
only good at keeping the terminally ill alive by treating the
complications of underlying disease, unnecessarily prolonging the
inevitable process of dying, and making it much more difficult than it
should be. Why do we desperately want to cling to life, and
hope for a medical miracle, especially when our experience shows us
that there's simply no such miracle for old age? Instead, why
don't we just learn how to discuss how we want to die our inevitable
death. What's so bad about talking about end-of-life
strategies? We just need to get over it. Is it
worse than watching someone die an unnatural, prolonged, or painful
death, especially when we know that's not what they want?
Too many times, we prevent people from dying a natural death.
Instead, in the name of love and hope, we employ medical technology to
try to save them, but it only prolongs their suffering. I
firmly believe that this is a form of torture, unknowingly induced by
one's loved ones. Usually, such patients are over 65 or 70
years old (and unconscious in the very last days), and they have been
diagnosed with some form of an advanced illness, such as diseases of
the heart, lungs, liver, kidneys, colon, pancreas, or
thyroid. They are usually said to be suffering from
"complications" of such diseases disease, and too often these
"complications" arose from unnecessary surgeries and/or
hospital-acquired infections. In truth, they were
misdiagnosed, because their primary problem is simply old age (Psalm
So, why do most people die in the hospital--the very place where we
expect healing? Well, it's more efficient for doctors to
manage seriously ill patients if they're in a hospital. They
can quickly and easily just walk from room to room, continuing to
recommend further testing when common sense tells us that there's
really nothing that can be done. They just spend a few
minutes in each room, exhibiting their ignorance, and collecting their
According to a recent "60 Minutes" report, most doctors get paid based
upon the number of patients they see; most hospitals get paid for the
number of patients that they admit; and, 30% of hospital stays are
probably unnecessary. Our primary care physicians could do
much of the same things in their doctor's offices, but they think they
can't afford to really spend enough time with a patient to see how
they're really doing, adjust their medication, etc. They too
have patients lined up in every room down the hall (and we're
"impatient" if they make us wait because they spent too much time with
their last patient). It's much easier for them, and much more
lucrative, just to admit everyone to the hospital. Then,
dozens of specialists can visit each patient, conducting even more
(often unnecessary) tests.
Unfortunately, 20% of Americans die in the ICU. Not only is
it expensive, but it's uncomfortable. Many such patients have
to be sedated or have their hands restrained so that they don't
reflexively pull out a tube. Today, this is normal, but I've
visited enough ICUs to know that it's not the way I want
to spend my
last days on earth. Even if we're not in ICU, 75% of us die
in hospitals or nursing homes. This just doesn't seem
"natural" to me, and the older we are, the more tragic it is.
I don't want to spend my last two months being hauled back and forth
between the nursing home and the hospital.
My grandmother was 86 years old (and obese and immobile) when she
became ill. She was transferred from a nursing home to a
hospital. The flesh on her arms was so tender that the nurses
actually tore her flesh loose by lifting her into the hospital
bed. When they stuck tubes into her, they were so
uncomfortable that she would pull them out. Good for
her! She did die shortly after that. Our health
care system was trying to decide how she would die, but she reclaimed
that responsibility for herself, knowing that it belongs solely to each
patient--not to doctors or our health care system.
Think about this: If you're 65 or over, and you go to the
hospital, there's a fairly high probability that you will either die
there, or come home far more sicklier than when you went in.
Doctors are ignorant. This isn't always a bad thing--it's
just the truth. We're all ignorant in many ways, and we all
need to keep learning. I believe that the practice of
medicine is just in its beginning stages. We've transitioned
from "bleeding" patients to over-medicating them, often with
medications that do more harm than good. Some day we will
learn more effective ways of treating illness, and maybe even achieve
"healing" once in a while. However, meanwhile, here's the
ironic thing, and the epitome of what doctors don't seem to
know: When we go to the hospital (even if we're just
visitors), we're exposing ourselves to hospital-acquired problems, such
as infections. There's a fairly good chance that a hospital
visit will actually make the patient ill, often by acquiring infections
there. Don't doctors take an oath to "First, do no
harm?" Is this the same rationale that some doctors use to
Doctors treat what they can treat--not what we have. This
reminds me of my own of my trips to doctors over the years. I
go in because my back hurts--they treat me for high blood pressure, but
my back still hurts. I go in because my hands are cold and
painful when I use the computer, so I'm having to curb my computer
time, and wear gloves when I do use the computer. After their
battery of dozens of tests, they diagnose me with some "default"
ailment, and recommend curbing my time on the computer, and wearing
gloves. How helpful is that? It filled their
pockets, but it did nothing for me.
I once developed an itchy rash, and visited the same doctor's office
for it three times during a two week period. Each time, they
would give me a prescription for some pills that did no good.
Meanwhile, I was miserable for two weeks. I couldn't sleep,
nothing helped, and I remember going out to the garage and lying in
front of a high-powered fan, looking for any relief at all.
Finally, on the third visit to the doctor, they said they didn't know
what to do. They referred me to a dermatologist who diagnosed
me with poison ivy, and gave me a steroid that helped
immediately. Why didn't they do this on my first two
visits. Although a skin rash doesn't sound very serious, I
had not been too far away from suicidal thoughts, especially if doctors
couldn't help me. Why couldn't they have just said, "I don't
know" to begin with?
My mother became ill with a severe loss of energy and stamina when she
was just 55 years old. The doctors performed just about every
test they could before they decided to test her heart. After
all of the various heart tests, and months after she had become so ill
that she couldn't work, they finally diagnosed her with congestive
heart failure. The results of all of their tests were that
there was nothing they could do to help her. She simply
needed a new heart and new lungs, but all of the surgeons said that she
was too high-risk for surgery.
So, she came home with nothing but some pills that didn't help much,
and a pile of bills. She actually felt worse than before
simply due to fact of knowing that there was nothing that could be done
for her. The closest thing to quality of life that she had
was to try to plan out her slow death and her own funeral.
Even that wasn't easy because she soon had to just lie in bed, on
oxygen. My dad had to carry her to the bathroom.
She lingered like that for years, before finally dying just after her
60th birthday. She too died in a hospital where she spent the
last couple of weeks of her life. However, my dad took care
of her at home until the very end.
Doctors (especially in hospitals) want to test us for any conceivable
condition we might have, even if we will never have symptoms or need
treatment for it. They think that they're practicing great
medicine, but this really just further exhibits their
ignorance. It's OK to be ignorant--we just have to know when
we're ignorant. Although we think that we've learned a lot,
we're just in the beginning stages of learning medicine.
That's one reason why doctors recommend certain treatments for years,
only to later reverse their decision on that treatment. We
all have learned to lower our expectation of doctors. First
we expect miracles; then, we hope for only healing; and, now, we just
ask if we can't get some "help," in any form.
They need to
learn to say, "We probably can't help you."
On the "60 Minutes" special, there was an 85-year old woman in the
hospital who was dying of liver and heart disease. Her 13
specialists conducted 25 tests. One of them even conducted a
pap smear (for liver and heart disease?)--how ridiculous (but
lucrative). Another one of her specialists sent to her
bedside was a psychiatrist, because she seemed depressed. She
told the psychiatrist, "Of course, I'm depressed. I'm dying."
In truth, she was probably depressed because they wouldn't just let her
Not only are most tests unnecessary and not helpful, but I would argue
that each test itself decreases one's quality of life to certain
degrees. Not only can some tests cause harm, such as by
exposure to radiation, but just having to take the test causes
stress. Each time we agree to have a test that doctor
suggests, here's the typical process:
- Go to the internet to find a provider who will administer
- Make multiple calls to that provider, for location,
logistics, insurance, etc.
- Call the insurance company to see what is covered, how much
they will pay, pre-approvals, etc.
- Schedule an appointment with the provider.
- Fill out a dozen sheets of paperwork for the provider (that
he should already have access to).
- Go back to the internet to get directions to the
- Take time off work.
- Drive to the provider's office, through busy traffic and
- Submit yourself to the test.
- Deal with any side-effects and complications.
- Pay for the test.
- Schedule another appointment with your regular
- Drive to your regular doctor's office, discuss how
unproductive that test was, and schedule your next one; then pay for
this useless doctor visit too.
- Spend the next few months calling various departments of
the insurance company, the HSA or FSA administrator (for
reimbursements), the provider, your employer, etc.
So, at this point, the patient has experienced additional stress
discomfort, but he is probably no closer to determining the source of
his problem, treating it, or feeling any better. Besides
this, he has spent hours and hours in the process, including many hours
on the phone listening to recorded voices, trying to select the right
choices, and repeatedly saying "agent," "associate," or just "help;"
talking to incompetent customer service representatives; and, dealing
with all aspects of an unnecessarily complex health care
system. These may sound like minor things, but they're
not--they count up quickly, and they do
matter. What does
all of this stress do to one's blood pressure, heart rate, risk of
stroke, etc.? Then, from a financial perspective, what did
all of this cost (the patient or the taxpayer)--probably all to no
avail? Furthermore, isn't our time worth something?
I spent a full year of my life being "treated" for severe
depression. During that year, I had approximately 100 visits
to various health care providers, including my primary care physician,
psychiatrists, psychologists, and counselors, plus all of the tests
that they suggested. It was basically a full-time job just
having an average of two health care visits each week. That's
no way to live. My quality of life was near zero, not only
from my ailment, but in large part due to the process for my diagnosis
There is one final point to make about medical testing. There
are basically no statistics available which would show how many tests
are unnecessary. One reason for this is that even if a test
provides no help in diagnosing or treating a problem, doctors always
say that "at least it ruled out" something. Well, that's not
good enough. It only reveals more ignorance. Furthermore, a
test sometimes reveals a condition which is not related to the problem
that the patient is complaining about. While doctors see this
as a positive thing--catching something that could be a problem later,
the patient (the one who is hurting) sees it as a negative thing--it's
not helping now. Instead of trying to do something about
something that the doctor thinks could be a problem later, let's take
our problems one at a time, and in chronological order: My
ailment is hurting me right now, and my doctor is showing his ignorance
Unfortunately, because of the inflated costs of medical care, we cannot
have a discussion of end-of-life strategies without talking about
money. If you're running a hospital, you have to keep that
hospital full of paying (preferably insured) patients, so that you can
meet your payroll, make a profit, and pay off your bonds. If
you're a doctor, you have to keep the patients coming back.
(Why do anything in one visit that you can do in three?) Hey,
I've got an idea: Why don't we pay these guys according to
how helpful they are instead of by the visit or by the test?
Maybe they could even keep a tip jar on the counter, like a
This is a problem for everyone--whether one has Medicare, other health
insurance, or no insurance. 85% of our health care bills are
paid by the government or by private insurers, not by the patients--ad
most of this is paid by the taxpayer. If the patient is on
Medicare or Medicaid, the taxpayer is paying for almost all of their
medical care, regardless of whether or not they get better, any
unnecessary tests that were run, or their ability to pay. We
need to budget
the amount of money that taxpayer dollars are spent on
health care. If we don't, then it's likely that our country
will go bankrupt, and this will be the single biggest cause of the
By definition, most of our essential health care is paid by the
taxpayers; i.e., most of our health care dollars are spent on the
elderly, and the elderly are on Medicare (even aside from
Medicaid). Like most things, if the government provides a
service, then we're likely to abuse that service. This is
just due to our human (sinful) nature, so we need to have some
reasonable constraints on the services provided (by the
In 2009, Medicare paid $55 billion for doctor and hospital bills during
the last two months of patients' lives. It has been estimated that 20
to 30 percent of these medical expenses may have had no meaningful
impact. Most of the bills are paid for by the federal government with
few or no questions asked. This is a perfect example of the
rising costs that I believe will eventually (soon) bankrupt our
By law, Medicare cannot reject any treatment based upon cost, as long
as it's some hi-tech treatment that
is thought to have some
potential of extending life. Medicare pays
patients with advanced breast cancer to receive certain chemotherapy
drugs, even when it extends life only an average of a-month-and-a-half
(and what is the quality of life during those extra 45
days?). For another example, Medicare pays $40,000 for a
93-year-old man with terminal cancer to get a surgically implanted
defibrillator if he also has heart problems.
I recently had a conversation with some relatives who are on
Medicare. One of them had just been to the doctor for a
particular issue, and I was curious what treatment would
cost. He said that he didn't have any idea because they never
look at the bill--Medicare just pays for it. I said that this
could be one reason for skyrocketing health costs. The man
defended himself by saying, "The way I figure it, I paid for
In other words, he had already paid that bill by working hard all of
his life, paying Social Security and Medicare taxes, so now the
Medicare system owed him a lifetime of health care for free.
Although I held my tongue, I wanted to say, "Well, you figured
wrong." Maybe it's time we stopped holding our tongue on this
issue. (I can, since I'm not running for office.)
Would we rather offend the elderly, or watch as our country goes
bankrupt? The truth is that this man (as well as the average
octogenarian) has not paid for those Medicare benefits.
Instead, his children and grandchildren are paying for them--including
any imbedded fraud just because he won't even look at his
bill. What kind of logic is this? If I'm entitled
to it, why not abuse it?
Consider an average elderly man who was born in 1929, and who made
average wages all of his life. He entered the workforce in
about 1947 and worked for 45 years, retiring in 1991. Even if
he made the maximum SS limit each year, he paid a total of $8,000 into
Medicare during those years. In 2011, he's 82 years old, and
in the 20 years that, Medicare has paid $300,000 of his medical bills,
including heart bypass surgeries, ranging between $50,000 and $200,000
each, etc. (Re. Social Security, he paid a total of $37,000
into SS, and since he's been retired, he has received $300,000 in
Social Security payments).
So, this man has paid $8,000 into Medicare, and he has received
$300,000 back from Medicare--a 3,700% return. (Furthermore,
he has paid $37,000 into Social Security, and he has received $300,000
back--an 800% return.) Yet, concerning his Medicare benefits,
he says that he has paid for it? He has paid about 2% of
it! His children and grandchildren have paid 98% of it,
partly because he doesn't even bother to look at his own medical
bills. We all know that Medicare fraud is widespread, along
with innocent mistakes. This man won't even glance at his
bill to see if his children and grandchildren are being financially
Are the Problem
We (patients and taxpayers) are a big part of the problem. We
want the best care, with no restriction on the cost, especially when
somebody else is paying for it. Some patients stay in ICU for
weeks or months, at the cost of up to $10,000 per day. We
seem to be willing to pay high prices for medical care, even when we
know that we won't get much help, and that much of our money pays for
fraud and abuse.
Here's one of the worst examples from the "60 Minutes"
program: A 68-year-old man wanted a liver and kidney
transplant, for $450,000 (of Medicare money). His doctors
told him he was too weak for it. They asked him what should
be done if he got worse and his heart or lungs failed. They
noted that resuscitation rarely works on someone in his condition, and
that it could lead to a drawn out death in the ICU. They
asked him if they should do CPR if his heart was to suddenly stop, and
he told them that they should. He said that he would rather
be in the ICU again. Then he joked, "It beats second
This is so absurd, I'm not really sure how to respond. Does
it really beat second place? To him, first place was
lingering in ICU (probably unconscious), and second place was
death. So, he was essentially saying that second place
(lingering in ICU) beats first place (death, and entering the presence
of God). It's just not rational. In my view, he had
these two backwards. Our goal should not to be to extend this
life, at all (of somebody else's) costs. This is "dying
badly;" i.e., suffering, connected to machines, and leaving behind a
mountain of financial debt when we do finally die. I believe
that we should sign living wills (or whatever is necessary) expressing
our wishes that no extraordinary measures be taken to keep us alive,
lingering in the hospital. I also don't want dozens of
specialist running their tests.
If we have Medicare, or other health insurance, we seem to no longer be
cost-conscious consumers, which would help to keep prices
down. Instead, we patients aren't the ones paying (most of)
the bill, so we're only conscious of finding relief from our ailment,
even if it means running tests that we could not otherwise
afford. Since most health care is paid for by someone else,
most patients don't even look at the bills. Do we act the
same way when we're financing a new car? Instead, everyone
wants all of the tests they can get, since they're (seemingly)
free. What causes us to react like this? Why are we
so reluctant to shop for the best deals, or even glance at the bills
when they come?
Here's the deal: If a person is rich, he should have all the
tests and operations that he wants, and pay for them himself.
If he's not rich, but has health insurance, he should realize that the
insurance company is paying much of his bill (and charging premiums
accordingly), and he should treat the insurance company's money as
though it were his own, so as to keep costs down. If he's
poor, he should realize that the taxpayer (Medicaid, etc.) is paying
his bill, so he shouldn't abuse his privileges.
Why don't we just make a rule that the taxpayer doesn't have to pay for
putting defibrillators into 93-year-old men with terminal
diseases? Maybe we (taxpayers) shouldn't pay for liver
surgeries and multiple cardiac bypass surgeries on
octogenarians. How much sense does that really
make? We need to limit these expensive procedures which are
paid by the taxpayer, based upon factors such as age, functional
status, quality of life, the ability to make adequate benefit of the
procedure, means testing, and common
So, does this mean that we should "pull the plug" for some
octogenarians? Yes. Does "limiting" mean
"rationing?" Well, I would call it rational
rationing. Call it what you want, but it's not only rational
and logical, but it's cost-effective for the other guy that really
needs it, and for the next generation of taxpayers. Besides,
I don't want to be kept alive on machines if there is no reasonable
hope of recovery.
My Plan for Dying
Although I am not afraid of dying, I do have some specific fears about
of dying. My primary objective during this
process would be to control my pain--not to prolong my life.
Like most people, I would prefer to die at home, with pain management
as required, and nursing/hospice assistance at home if
necessary. If this isn't possible, then my next choice would
be a hospice facility. (These facilities have been shown to
be very cost efficient.) My next choice would be a nursing
home, and my last choice would be a hospital.
Many dying patients that are treated aggressively when they would
actually prefer less aggressive care if we would simply and honestly
explain the options to them. They too would prefer to be
cared for at home, or at a hospice facility, but they can't really make
an informed choice.
Now, does my Plan for Dying work for everyone? Of course
not. If I have a ten-year-old grandson who develops a serious
medical condition, I would hope that his parents would carefully weigh
all of the options, and do everything within reason to
find a cure
and heal their son. After all, this child has 70 years of
life ahead of him. He's young, and whatever the doctors do
for him will be that much more valuable for his life.
However, what if I develop a serious (perhaps the same) medical
condition when I'm 65 years old or older? The answer is that
we simply treat me less aggressively. We still do everything
within reason, but the definition of "within reason" changes and
matures with age. Now maybe we don't spend hundreds of
thousands of dollars on tests to try to find the cause. Now
maybe we don't spend a half-million dollars on multiple 12-hour
surgeries to try to fix me so that I can live a couple more
years. Now maybe we draw those lines differently.
Now maybe we accept a diagnosis of old age, even it seems a bit
premature. Maybe I aged faster than others. Maybe
we just try to make me as comfortable as we can.
There is, however, a big problem with a plan like this. Who
gets to decide whether or not I am within a couple of months of my own
death; i.e., whether or not I'm terminally ill? If I get
sick, who is to say that a trip to the hospital might make it
better? The answer is, quite simply, "I do."
However, I'm not a doctor. What if there are doctors who
believe that they might be able to improve my condition or my quality
of life? Well, doctors have never proven much to me, so I'll
just stick with my own control over my own life, if you
please? Besides, surely most doctors know at least enough to
tell that a patient is not likely to get well. BTW, there's a
big difference in possibly "getting better" and getting well--either
way, it's still my call.
What if I get cancer, and the doctors recommend chemotherapy,
radiation, and all the side-effects (new sickness) to go along with
them? What if I don't want to start intentionally killing
cells in my own body--probably good ones along with bad ones?
Again, it should be the patient who makes the decision, based upon age,
possible benefits, side-effects, etc.
But what if I make a choice that proves to be wrong? What if
I avoid the hospitals, then they make some new discover, but it's too
late for me; if only I had gone to the hospital sooner. What
if I increase my risk of death by deciding to stop taking a particular
medication, perhaps due to its unpleasant side effects? The
answer is still the same, right or wrong, "I do."
Here are some specific examples (from true life experiences that I have
- If I'm in hospice care, and the doctors say that I have internal
bleeding, and that I need to receive a pint of blood every
week: No, just make sure I have adequate pain killers, and
give it up.
- If I'm 75 years old, and my kidney function has decreased to 15%, I
don't want to be put on dialysis three times a week. Just
make me as comfortable as you can.
- If I'm 70 years old, and in poor health anyway, and the doctors
remove a tumor and indicate that they "got it all." When they
suggest chemo: No, if they got it all, then why do I need the
chemo. If they didn't, what is the chemo going to do for my
quality of life during the little time I have left.
- From this point on (56 years old), if I really need chemo, and the
doctors want me to return regularly to be "scoped" for more
tumors: No, what's the probability of more tumors?
If new tumors do develop, this indicates to me that they're going to
keep returning, and I'm going to die of cancer. Again, what
is further treat (surgery, chemo, radiation, etc.) going to do for my
quality of my limited remaining life.
It's important to note that this is not submission to an alternate form
of suicide, or even quickening one's death. Doctors are never
really sure of the benefits and side-effects of a
for a particular patient anyway, especially when combined with other
medications. We're still letting God decide, using our best
judgment--just not necessarily some doctor's judgment.
It's still my choice, so I'll gladly accept the
responsibility. I've made many mistakes in my life.
I'm sort of used to it. However, it's not only my choice and
my responsibility, it's also my
Owen Weber 2011