Endings
Our society botches the fact that we
all die. When I first began to see people die 65 years ago, death often came
swiftly: we didn't have intensive care units, and didn't fight vainly against
the inevitable.
Some of those deaths were dreadful. As
a medical student in 1947, I looked after a lad exactly my age, 21. An accident
crushed his legs. His kidneys shut down and the waste products healthy kidneys
deal with were poisoning, soon would kill him. But briefly his mind was clear
and he had discovered his predicament. He shouted in rage and terror at being
robbed of a life that until then had been an exultant and unalloyed delight.
Before
dialysis the death of a youngster from kidney failure may have been the hardest
to watch helplessly from the sidelines. That fate befell an occasional pregnant
woman. Terminating the pregnancy could save her. When abortion was illegal
except in such dire circumstances, deciding whether to intervene to save the
mother's life was probably our toughest ethical problem. I don't envy my young
colleagues: the ethical and moral problems at the beginning and end of life are
more complex and troubling than when I was their age.
We’ve taken pointless postponing of
the inevitable to extremes that would be farcical if they weren't a perversion
of what the caring professions should be about. Death is put off for many by
mere weeks. Economists say more than half of all lifetime personal medical
expense often occurs in the last weeks of life. It's called expenditure on
health care but it's sick care, an investment in care of the terminally ill.
I'm not suggesting it’s a waste of money, but it ought to be spent with
compassion and common sense and often it isn't. It isn’t compassionate to
prolong dying by poking tubes into every body orifice, making extra holes to
insert devices, drip fluids and pharmaceuticals into veins and arteries, to
force air into lungs that only want to rest after a lifetime of work. It isn't
compassionate when loving ones can't talk to each other because the
paraphernalia of life support systems make speech impossible. It isn't
compassionate when dying is painful, as it may be despite pain-suppressing
drugs. If the drugs deaden pain they often cloud consciousness, a delicate,
difficult balance. I have a "living
will," with explicit instructions that no one shall do futile things to me,
but will I want to talk if it’s painful? I’ll have to decide, if I face that
fate some day.
Does
refusal to admit defeat lead physicians to deploy such weaponry? Some members
of my profession can't concede that the forces of nature are more powerful than
they are. We doctors are an arrogant lot, so sure we know what's best, yet
often wrong.
Human nature is ultimately
responsible, not the doctors. Loving ones want to cling to the last spark of
life, don't want to hear if told that it’s kinder to allow Death in. The grief
of bereavement is a universal human quality, something we all experience when
those we cherish are taken from us, grief we prefer to postpone. A core value
of our culture is that every life is precious until its end, so we delay that
end as long as we can.
Are
these values immutable? Recalling my childhood, I'm struck by changes in values
in my lifetime, perhaps related to changes in family structure and function.
When I was a child, most families were large and close-knit; we made our own
entertainment, we supported one another in hardship or crisis; we took care of
our own frail elderly. Divorce was rare and stigmatizing, unmarried mothers
were outcasts. Now most families are small, often scattered, single motherhood
by choice, unmarried couples living together, divorce and remarriage, and
depositing elderly relatives in retirement homes, are commonplace and socially
acceptable.
As the baby boomers grow old in a restlessly
mobile society of fragmented families, many may lack frequent contact with, or
easy access to close kin. Some have no kin. Instead of the networks that united
families and occupied their leisure time, they may have only television and the
internet for company. Relatively few may have adequate resources and social
safety nets after a lifetime of precarious employment without pension plans. Will
many die alone, unloved? Or will values change with demographic realities? Aging
boomers and the generations who come after them will have to confront these
questions. They may be less inclined than we are to postpone death, to invest
in the frail elderly. They might entertain the notions of assisted suicide and
euthanasia.
We
can rejoice when death is timely, celebrate a life well lived, be thankful for
all that the dead one accomplished.
My father lived a long life and
enjoyed it with gusto until his mid-80s when things began to fall apart. His
intellect was intact to the end but he lost his sight and balance, his supple
joints and strong muscles, control of his bladder and bowel. He was
infantilized: diapered, washed and fed like a baby. To a fiercely independent man this loss of
autonomy was the hardest affliction to endure. He didn't lose his sense of
humour though, and developed ability to curse colourfully at his worsening
infirmities. He died in a foreign land, Malta, a tax haven where he had come to
rest a few years before, with no family close by, and funeral rites of a
religion he had scorned -- he was a sincere and blasphemous atheist.
It was a bitter cold day for a
funeral, the first day of a new year with snow almost to sea level on Sicily,
whence the penetrating north wind blew. There were glitches. In the service in
the nursing home where he died, the priest's remarks were accompanied by
electronic carol music that couldn't be turned off, and the most solemn parts
were intoned to the tunes of Jingle bells
and Rudolph the red-nosed reindeer,
bringing giggles from acquaintances who accompanied me, the sole family
mourner. There was another hitch when time came to lay his coffin to rest. The
attendants, short-staffed because it was a holiday, were placing another coffin
in its niche in a distant part of the cemetery and kept us awaiting the burial
service for twenty minutes. I was shuddering with cold by then.
No wake then, but a splendid one a
few months later on a sunny day in Los Angeles among friends who had worked
with him at the University of California for twenty years after he retired from
his Chair in London. Throughout it all, from the cold New Year's Day in Malta
to the comfort of the UCLA campus, there was relief that my father's travail was
over, and rejoicing at all he had accomplished in his long and interesting
life.
My wife, my best friend, my lover
for 55 years, died last year of ALS. This is a horrible fate for a younger
person but in her mid-80s it was a gentle process that lasted just over a year
from diagnosis to death. She had no pain, her mind was intact, she stayed home,
and we knew how her illness would end in sleep from which she would not awake.
I was with her throughout and we had compassionate, skilled care. We shared
jokes and DVDs of our favourite television programs. When swallowing became a
problem, our son-in-law, a gourmet cook, pureed and froze delectable dishes
that we thawed and reheated for her dining pleasure. Our small Canadian family
rallied around, our larger networks in New Zealand and Australia stayed in
touch by phone and e-mail until the end of her life. She died with our children
and me around her bed, each in turn holding her hands.
Selflessly altruistic to the end, she donated her body
to the medical school so she had no funeral but a few months later our family
and over 100 of her friends celebrated her life. She had touched us all through
her dedicated volunteer activities and innumerable acts of kindness and words
of comfort. She lightened the lives of everyone she met, and many confirmed
this with their anecdotes at the celebration of her life. It was a cheerful,
fulfilling day for all of us.
We don't fully die while others remember
us happily. John Keats, aged 26, abandoned his rotting body when the bacilli of
tuberculosis had consumed so much it was no longer habitable, but his soaring
spirit will be with us as long as people read his poems. Our culture is rich
with immortal reminders of creative artists of every kind; and original,
creative scientists too. We lesser mortals have a little deathlessness meted
out if those who are left remember us, hold happy mementos of our existence. Nobody
should need to ask for more.
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