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| The Rest |
The fact is that we all die. Sooner or later, for one
reason or another, we die. Also, there are two kinds of death, mainly - the sudden and the long-drawn out, dragging on kind.The other fact is no doctor, whatever his
credentials are, can grant us immortality. Now most everyone hopes for a sudden, painless death, but not many meet their ends that way.
Those facts are inevitable, and out of our hands, but
there is one fact that we can control – to a certain extent. Here is where scientific
advances should help us deal with it in a better manner, when the time comes. Doctors could help improve the quality of our lives, hopefully.The
pain, if there is any, for instance, while nearing the end, and the way it all
ends, can be controlled to a great extent. And then there is the other
emotionally charged issue of taking care of the older generation, once they are
totally bedridden, in the right manner.
For me, how these matters are dealt with, is a sign of the amount of progress in healthcare in a given society.
While most western societies have made great strides in some of these areas, societies
like India are still enmeshed in the old taboos and fears and guilt, and shame.
We Indians pride ourselves in that we take care of our old. Maybe it is true in
some ways. However let us take a close look at the reality here.
The grandparents
are still important parts of the family. Many sons and daughters take care of
their parents in their old age. But old age does not preclude just a sage wise
person sitting in his or her arm chair handing out wisdom and memories, and
smiling at the antics of the grandchildren, telling stories of old times. Things could change in the blink of an eye,
for as time goes by, that machine that is our body will go haywire. And the
older person is struck down all on a sudden. What now? Many children and/or the
spouse of the invalid still try to do their duty to the best of their
abilities. After the initial burst of overwhelming help and support by everyone
around, if he or she bounces back, things go back to normal. But if the
condition deteriorates and the elderly individual succumbs to “real” old age,
there will not be that many around – just the immediate family. Most often, especially in my part of the old
country, it is the sons’ wives who get that responsibility. Daughters, if there
are any, visit once in a while, and depending on the situation, and their
personal nature, find fault with the way things are done, or not. And they are
supposed to take care of their own in laws. Needless to say the now grumbling
daughter in law carries on the thankless job. Anyway nobody is happy. By the
time the older person is totally immobile, completely bedridden, with or
without his mental faculties, his condition has drastically changed from what
was before. Soon he or she is relegated to a room away from the main
activities. The toll of taking care of a completely immobile person with no end
in sight hits everyone – economically,
time-wise, emotionally. In many households hygiene of the older person becomes
practically impossible to keep up. Infected bed sores, the stench of bodily
excretions, and above all, the agony, frustration, loneliness, and helplessness
of the once able human being, and that of the care giver. I have seen many an
old person who is emaciated, curled up in a fetal position, with eyes staring
vacantly, sometimes howling in pain, and visitors looking at him or her with
pity and wonder. That person has become an exhibit to look at, and to the
pious, an example for what human vanity and pride comes down to in the end. The
person is bereft of whatever dignity he had, reduced to a shadow of what he had
been. No one thinks of the care giver, who most of the time, would be a woman,
by the way. Sending them off to hospices, or homes, however comfortable and
well equipped these are, is still considered cruel and selfish. It is as if we
are throwing away our older people once we have no use of them. But we need to
rethink these ideas. At least with our generation, when we have come so far, we
need a better plan.
Let us take, again, some characters from my part of the
world. Now I can understand that the doctors and the hospitals need to make
money. But when we know that many of the doctors there became doctors because
their parents paid the colleges hundreds of thousands, even when the son or the daughter has no aptitude, and
when some are really dumb, money becomes really significant. The parent has the
money, so the children shall be doctors. And have to try to get back that
investment and more, by going into arranged marriages. Again. money from the
girls’ parents. But most of the time, this money from the girls’ family ends up
going back to the girls’ family within a year. The daughter sees to that if she
is smart. So what now? Squeeze the patients. What else? Ply them with tests,
treatments, drugs – sometimes useful, at other times, not. Since there is no
accountability in these areas, doctors and hospitals get away with mistakes of
many kinds. But that is for the living. What about the dying?
Suppose I have been diagnosed with a terminal illness
like cancer. The doctors themselves say it is incurable, as it is stage 4,
spread to all areas. But then comes the double talk. In one breath they talk to
you about “palliative” care and “aggressive” treatment, say, chemotherapy and
radiation! Totally misleading, and contradictory. The patient’s loved ones are
at that point grasping at straws. Hoping against hope, and unable to think
clearly, they go along with whatever the doctor says. Like car salesmen trying
to sell varieties of useful and useless warranties to the unsuspecting,
vulnerable customer, doctors shove down futile treatments onto terminally ill
patients. This is not limited to India – happens in the West too. Money may not
be the only reason behind it. Adherence to traditional, supposedly more ethical
thinking and a whole lot of complex layers of reasons could be acting here. But
money is one big factor, like death. The only useful and possible warranties
that the patient could get are to be free of pain, and to die relatively
comfortably.
The only advantage here is for the doctors and the
hospital in which they have shares. Here enter the tubes down all your
orifices, the other main character, the ventilator. Recently I heard of an
elderly woman whose husband was diagnosed of some illness and was under
treatment at a reputable hospital in India. She had no idea what the illness
was. One of those medical mysteries. Anyway the man slipped into a coma. The
doctors had given up hope. They said there was no cure. Still, tubes were down
his throat, soon he was on a ventilator. After two months of this, the man
died. Meanwhile the woman had sold everything of value including her house to
treat her husband. Now she goes to work in of our neighbor’s homes as a
cleaning maid and lives in a room paying rent. So many questions arise, so much
pain could have been avoided.
Another case – A
75 year old nun fell. She couldn’t walk after that. Nothing wrong, the experts
said. Soon she is bedridden. After a couple of weeks, she refused to eat.
Clearly she was fed up of everything – the prayers, the mockery, the indignity,
the great fall from who she was once, and most of all, the pain. Reduced to skin and bones, and clearly depressed,
she stopped talking or responding. Still they plied her with stuff for that
complex, unknown reason. She was still in pain. Totally silent, except when she
was screaming in pain, soon she lost what was left of her mind. She lay there
curled up. Her refusal to get up and walk was seen as stubbornness, and an act
of defiance against god. Her refusal to pray is seen as a sign of her
inherently evil nature. In fact they shove prayers down her throat
persistently, when obviously, all she wants is peace and quiet, and something
to make the pain go away, and possibly, just to die. Pious songs broadcast all
the time, Holy Mass droning on, on the TV set –what more could she want, her
visitors marveled! Any sane person would go crazy in that atmosphere. Her pain
is looked on as punishment for her sins, for her pride when she was young. Her suffering is at once an exaltation, and an
example of, the end of, the futility of all vanities. And all this in a place where
all the inhabitants are educated, where in fact they run a well equipped
hospital with highly trained specialists. But since they believe in the
sanctity of human life, she is still kept alive. Tube down the throat. Must make them feel virtuous. It is also to
show the nun’s relatives that they are doing everything to keep her alive ,
that they are not killing her off. Litigation is what they are afraid of. This
happens in many a layman’s home too. This is one way that religion aids and abets that hope mongering business of
the doctors. After all, we Christians exalt suffering, as if God is a sadist
whose main entertainment is watching humans beg and crawl, and howl in pain.
I know many
including the above-mentioned doctors
wave the “positive thinking”, hope and will power flags. That is just
it- waving. Not very different from the snake oil -charlatans who pretend to work
miracles, exploiting the weakness of the common man. Once the body is ravaged
by a terminal disease and when there are no cures in the offing, no amount of
positive thinking is going to stave off death or pain. Feeding on the patient’s
and his loved one’s misfortune and vulnerability is not ethical. I know these “godly” doctors
will tell you oh so humbly that they are not gods, that it’s all in god’s
hands, (what's he doing here then?).And there will be his colleagues who promote the hype of a particular
“godly” healer - so he could be god! or so we are made to think. So the godly person lets us go on suffering. As if he can grant us immortality. They all
share in the profits. All the while they do know when a person’s body is run
down, when all his vital organs are shutting down, and that he is in
intolerable pain, and that he is not ever
going to get up and walk around, fit and strong. If there is a little bit of
humanity left in these healthcare professionals, they will treat that pain, and
tell the truth as they know it. It’s up to the patient, the individual to
decide when to go based on that knowledge. That is the scientific advance that
I want. That is why we read of doctors who decide to put an end to their own
lives when they know they cannot stand their own suffering, when they do not
want to be a burden on their loved ones.
Money is in the prolonging of a life that struggles to
escape. And now a days there is the waiting for the arrival of any children who
live abroad. The patient is kept “alive” till these relatives can see him. It
is as if no one cares about the suffering of the individual. For the past few
months, I have been watching episodes from Herriot’s animal stories. That was
the first time I had known about the TV series, even though I had known of the book. I was touched by the kindness
and love that those owners and vets shower on their patients. And when they
know that an animal cannot live a useful life any longer, that it has to suffer
pain unnecessarily that nothing can save it, they have it put to sleep, gently,
as much as they can. Now I am not touting euthanasia here for all the sick
people. Being human, I am talking about the individual’s right to choose his or
her own end, and to be free of pain, when the time comes. By a sad coincidence
I just read about the actress who played Herriot’s wife, Lynda Bellingham who
stopped her aggressive treatments for the cancer that had spread to her liver.
Just before her death she talked about the effects of chemotherapy that people
are not aware of.
When we know that the end is here, we should be allowed
to go a little gracefully, with a little bit of dignity. It is time to ask
certain questions to ourselves, to the society as a whole. And to answer and act accordingly without
fearing what others would think : Why aren’t
we thinking of that time of our end here a little more? We seem to be inordinately interested in life
after death. Religions especially. But isn’t it time we thought about death?
Its practical side? Why do we exalt
needless suffering? Why do we feel the need to prolong life that is
insufferable? Can’t we show a little bit of kindness to ourselves? As it is now
in India, one thing I am sure of is that I would not want to die there. Her
fatalistic, cavalier attitude to pain is frightening. I will have to go live in
a country where they provide assisted suicide to those who want it.
This is
where “living wills” come in. The public has to be educated about the
importance of having a plan for medical care when the end of life is near. A
plan for dealing with death. while we are able to think for ourselves, we make
that living will. Death could come at
any time, to the young and to the old. Accidents happen. Illness, surgeries
happen. We should be able to decide what should be done if things go wrong,
when we still have our mental acuity. So prepare that living will today. Let us
try to die in peace. To the religious, God would not want us to suffer. He or
she would want you to take advantage of the scientific progress that human
beings have achieved under said God’s guidance.
According to the Mayo clinic site, “Living wills and other advance directives are written,
legal instructions regarding your preferences for medical care if you are
unable to make decisions for yourself. Advance directives guide choices for
doctors and caregivers if you're terminally ill, seriously injured, in a coma,
in the late stages of dementia or near the end of life.
By planning ahead, you can
get the medical care you want, avoid unnecessary suffering and relieve
caregivers of decision-making burdens during moments of crisis or grief. You
also help reduce confusion or disagreement about the choices you would want
people to make on your behalf.
Advance directives aren't
just for older adults. Unexpected end-of-life situations can happen at any age,
so it's important for all adults to prepare these documents.”
Besides that, our healthcare providers should admit that we are nearing the end,
when that is the case. The whole process, all the information has to be made
available to the patient. Such transparency will make it easier for the
individual to make an informed decision. Of course we should be free to seek
second or third opinions, if we want to. But they have to give us the truth as
it is, and we have to accept it. We all say that death is inevitable, but it is
hard to look it in the eye when we are made aware of it.
Related to the end is the treatment of pain. Everyone
including the doctors must know the meaning of “palliative” care. At that time
when we need relief from pain, we deserve total relief. And that may lead to a quicker death. Let it
be. The transition from life to death should be gentle, soothing like one is
going to sleep. That would mean a lot more hospices, and care homes for the
terminally ill, for the older members of our society. Humane, ethical institutions
which are accountable to the society. And that would mean all the more
responsibilities on the part of the society to make sure that they are run with
the one intention of the well being of the patients. For making sure that they
will be comfortable till the end. And we must realize that it is all right if
we decide that we are not able to look after our loved ones satisfactorily. In
fact we should be true to ourselves, ask ourselves if we are helping our loved
one in the best possible manner. If we think that we are not, then we should
seek help, without guilt or stigma. The State’s responsibility should not end
with the death of a person, but it should include the process of dying. Each
one of us should take responsibility for our ends when we can, and ease a little of
the burden off our children., and try to help educate our still unaware countrymen.
Please read the whole article about “living will”
here:
