To die proudly when it is no longer possible to live proudly.
Death of one's own free choice, death at the proper time, with a clear head and with joyfulness, consummated in the midst of children and witnesses:
so that an actual leave-taking is possible while he who is leaving is still there.

- Friedrich Nietzsche
 

It is the scene modern man dreads.  He is in a hospital, desperately ill and alone.  By his side is a respirator, supplementing his breathing with a regular sigh of its own.  Tubes run into his nose and stomach, carrying fluids that keep him alive.  As death approaches, he has lost control of his life.

Man can cheat death.  But the cheating brings with it a crowd of questions.  Should people be kept alive who, without intervention, would surely die?  Should patients be allowed to choose for themselves whether or not to go on living?  Should doctors become ministers not of cures but of easeful death?  How are life and death to be valued?

Doctors still presume that resuscitation - life at all costs - is what patients and families want.  In the case of terminal patients, that assumption is increasingly wrong.  Public opinion, both in America and outside it, is overwhelmingly on the side of withdrawing all "invasive" and "extraordinary" treatment in such cases.

If courts and hospitals decide otherwise, it is not always on the ground of preserving life for its own sake.  They wish, sometimes, to protect the patient's interests against those of the family.  And there are times - as when, for example, Christian Scientists refuse life-saving blood transfusions for their children - when the public may agree with that.

Yet what are a patient's best interests, and how are they to be discovered?  Against the principle of state interest looms the equally weighty principle of autonomy: a person's right to privacy and the direction of his own life.  In the end, autonomy decides most cases of the "right to die," but it is a principle that may sometimes lean toward life, not death.  Can anyone say, on behalf of a patient unable to speak for himself, that his life is not worth living?

Modem euthanasia, it is said, is saved from the slippery slope of these subjective decisions by its voluntary nature and by the professionalism of doctors.  Officials of the Voluntary Euthanasia Society in Britain, as well as the Hemlock Society in America, emphasize that a patient's trust in his doctor is confirmed by the ultimate trusting act of putting his life at the doctor's disposal.  They want euthanasia to be an "option" of last resort.  And they want that option to be legalised, for an eminently sensible reason: It could then be overt and properly regulated.

The prospect for most euthanasia legislation remains dim.  Many doctors, as well as voters and legislators, feel deeply ambivalent about it.  Many Dutch doctors, for example, are opposed to pending legislation that would let them perform euthanasia provided they tell the police.  Although they would like clearer guidelines, these doctors still want what has been called a "private space" within the public law, a place where doctor and patient can make their decision without intrusion.  The very idea of that "private space" implies, first, a breach in the law in which acts can be performed covertly and possibly without accountability, and, second, that a conscious decision to die or to dispense death is one in which society as a whole has no interest.

In the present century, the developed countries have hidden death away.  Three quarters of all deaths occur in hospitals, behind screens or in separate rooms.  A quarter occur with no close relative present.  Each man is an island, it seems, whose death is largely his own affair.

Yet society has a legitimate interest in death.  Not many years ago, the whole village, not just the dying man's family, gathered around to give him strength.  If societies can no longer agree on the meaning or purpose of death, they can still construct legislation to allay the fears of the dying about what will happen in what is left for them of this world.

First, they could recognise the right of the terminally ill to decide their own treatment.  This would be done by a standardised document, filled in on admission to the hospital, if not before; by the routine appointment of a proxy with durable power of attorney; and by continuing consultation with a doctor, so that the dying can change their minds.  Where there can be no statement of intention (as with infants), the basis of decision would be the balance of burdens and benefits to the patient of a certain course of treatment.

The patient's right to decide his treatment would stop short of the right to request death.  If no extraordinary means were used to prolong life, death would not be unnecessarily delayed.  His life, meanwhile, would be made as comfortable as possible.  He would receive, as a right, pain control, therapy, counselling, and food and water to the extent that these could be taken normally.

He would not need to remain in the hospital.  At the moment, health-insurance and social-security payments are skewed toward hospital care.  These could be redirected, with appropriate safeguards, toward care at home.  General practitioners should be trained to counsel the dying and encouraged, as in the old days, to make home visits.  Churches and neighbours could be mobilised, as in the old days, to share the burden of comforting.  With all this, euthanasia could - and should - remain illegal.  If it were ruled out, the dying would not feel there were an "easier" or "quicker" route that they ought to take, and it would not be offered to them.

To civilise death, to bring it home and to make it no longer a source of dread, is one of the great challenges of the age.  These changes would be a first step on that road.  The road leads not to total control of dying (as it should not) but to acceptance and understanding.  Gradually dying may come to hold again the place it used to occupy in the midst of life: not a terror but a mystery so deep that man would no more wish to cheat himself of It than to cheat himself of life.

Source: World Press Review October 1991 originally from the newsmagazine The Economist

I personally feel if a terminally ill person, particularly one whose pain cannot be alleviated, requests an easy death after due rational consideration, that request should be honoured.  Curiously, many people have no hesitation about euthanising a beloved pet (see the poem which follows) - few argue for pain medication which will allow the animal to face the "mystery" of death.  (In the poem, try substituting "cardiologist" for "veterinarian" and imagine the subject is grandfather.)

I don't presume to know the mind of an animal and would tend to err (if, indeed, it is an error) on the side of letting natural events unfold.  I have on more than one occasion attended to the animal's needs and sat with it, stroking and talking to it until it died.  I have found the experience moving.

Choice

For him an easy death,
legs buckling, body going limp
an instant after the injection,
weeks of indecision ended
by the veterinarian's thrust
of a needle to his heart.

When is the moment
to ask the mercy killing
for an old and faithful friend?
When he whimpers,
tries to rise and legs collapse?
I said, It's time,
but how could I be sure?
His own one life, like ours,
was all he had;
in pain, failing, did he want
another hour, another day?

Vacillating, I read of parents whose
doomed baby doctors could have kept
alive a few days, a few weeks. They
chose to let her go, together holding
their joined lives her last hours.
Whether an old dog, new life forming,
a fatally-impaired infant,
saying yes to death
claims two, the one that goes,
the one that stays. We keep
private anniversaries, we women.
Signing the paper, I died a little,
die again at each remembering.

Fionna Perkins
Gualala, California

Source: Some northern California beach newspaper May 1993

For an opposing viewpoint on euthanising pets as a matter of course, see also:

Maturity (in the section on Animals) - "...But what right have I to end this brave fight?"

The Healing Arts

Source: tinyurl.com via sprott.physics.wisc.edu

by Alexander G Bearn

Review of Genes, Blood and Courage: A Boy Called Immortal Sword by David G Nathan Harvard University Press 1995

Somerset Maugham, in his last major work Summing Up, reflected on the importance of his clinical experience in his writing:

I saw how men died.  I saw how they bore pain.  I saw what hope looked like, fear and relief; I saw the dark lines that despair drew on a face; I saw courage and steadfastness.  I saw faith shine in the eyes of those who trusted in what I could only think was an illusion, and I saw the gallantry that made a man greet the prognosis of death with an ironic joke because he was too proud to let those about him see the terror of his soul.

During the past 30 years, the perception that doctors should remain silent about the diseases of their patients has altered.  Perhaps the most startling medical revelations related to the changing state of President Eisenhower's bowels, which held the American public suitably enthralled.  This was in marked contrast to Lord Dawson of Penn's laconic bulletin on King George V: "The King's life is moving peacefully towards its close."

Source: Nature Vol 377 12 October 1995

Sooner or Later

Everything that doesn't kill me only postpones the inevitable...

At the End, Exuberant

by Laura Landro

A review of the book Not Fade Away by Laurence Shames and Peter Barton, Rodale, 224 pages

A first-person account of a long and painful death at the age of 51 may not sound like the most uplifting subject, but Peter Barton's reflections on his life, illness and approaching end are positively buoyant, right down to the picture of the author airborne on the cover.  Unlike many who die young, he had enough time to face his death, look back on his life and identify the things that matter most - love of family, integrity and simply doing one's best to live the right way.

Laurence Shames, the co-author of Not Fade Away, came along to play Mr Barton's Boswell on the final journey, confronting his own mortality along the way.  But Tuesdays With Morrie this is not; these are children of the same generation, and Mr Barton never had the time to gain a whole lifetime of perspective and wisdom.  He was in his prime and just beginning to look for the next challenge when he was diagnosed with stomach cancer at the age of 47.  He had already made enough money as a cable TV entrepreneur to retire, but suddenly there was no future to plan for.  Though he beats back cancer the first time with his characteristic Master of the Universe confidence, it recurs with a vengeance.  It's a sobering reminder that the disease, for all the advances in treatment, still kills without mercy and that many who are stricken just aren't going to make it no matter how many resources they have at their disposal or how determined they are to fight.

His own father's untimely death at 45 from a heart attack gave Mr Barton a premonition that he might die young as well.  But it also motivated him to pursue both a vigorously healthy lifestyle and the financial success that would ensure that his own beloved wife, Laura, and their 3 children were well provided for.  He earned a Harvard MBA and became right-hand man to media mogul John Malone, founder of TCI and Liberty Communications.  Still, he remained in many ways a product of his time, a baby boomer who graduated into adulthood but never lost the spirit of his youth: a rocking garage-band musician, daredevil ski bum and 1960s "radical" who can finally admit he attended political rallies mainly for the opportunity to meet girls.

Mr Barton spares readers the gruesome details of his sickness but hauntingly describes the disconnect from the body, once so vital, that begins to betray him, until he feels like "a passenger on a doomed airplane," strapped to his seat and watching the engines flame out one by one.  When he learns that there is nothing that can save him, he is filled with fury and rage, a refusal to believe he can't negotiate, strategize and plan his way out of this fate.  But peace eventually comes.  Though he shuns both organised religion and New Age spirituality, Mr Barton had already sensed the divine at the birth of his children.  He formulates his own way of praying and finds acceptance and grace.  But he never loses his exuberance.  The day he found out that his cancer had returned, Mr Barton went to a Rolling Stones concert anyway and got swept up in the sheer excitement of being in that crowd, singing along with the music that had been the sound track to his life: "Love is love and not fade way."

For readers starting to take stock of the life they've lived so far, and thinking about how to spend the rest of it, the lessons here won't fade away, either.

Ms Landro, an assistant managing editor at the Journal, is the author of Survivor: Taking Control of Your Fight Against Cancer.

Source: The Wall Street Journal September 2003

The British Way of Death

by Jane Feinmann

A leading cancer specialist, who recently developed a tumour and refused a course of treatment that he admitted would have been a routine referral for his patients, explained the discrepancy to a colleague.  "It wouldn't do me any good," said the doctor, who has since died.  And he added: "But of course I refer my patients because they expect me to do so."

The conversation was treated as highly sensitive information when it was repeated anonymously at a recent conference, touching as it does on an increasingly controversial area of health-care management – the care of the dying.

Some doctors estimate four-fifths of the NHS's cancer-drugs budget and around 40% of its total budget is spent in the last year of life – and more is spent during the last few weeks than on the months and years of care that precede it.  There's growing unease, however, that this huge slice of funding, mopped up by expensive new drugs and the costly, routine interventions of intensive care, pumps to sustain circulation and respirators to ventilate the lungs, is not necessarily money well spent.  "Many patients today die deaths they deplore in locations they despise," is the bald claim of one expert, quoted in the British Medical Journal.  For all the funding and expertise, the terminally ill frequently spend their final weeks in uncontrolled physical pain and emotional isolation.

There's also recognition that more is needed than mere tinkering with the system – by, for example, opening up more hospices or providing more palliative care.  Both within the NHS and among the public as a whole, what seems to be needed is a radical shift in our attitudes to mortality.  As Rabbi Julia Neuberger, chief executive of the The King's Fund, an independent health policy foundation, puts it: "Our fear of death, our head-in-the-sand attitude... results in thousands of people dying every year, unnecessarily badly."

The factors conspiring to frustrate the universal hope for a "good death" swing into action right from the very first moment when a doctor breaks the bad news.  Inevitably this comes as a terrible shock, but its impact is frequently made far worse by the doctor's reluctance to put a death sentence into words.  An extreme example comes from Jane Salvage, former editor of Nursing Times, whose mother was left to draw her own conclusions about the serious nature of her cancer when, after weeks of tests, she received a letter telling her she had an appointment in two days time at a department of palliative medicine.

Having learnt the worst, the next thing a patient wants to know is, "How long have I got?"  "Achieving a good death, one that is consistent with the patient's wishes, requires some advance warning and that is just not happening," says Nicholas Christakis, Professor of Medicine and Sociology at Chicago University, and author of Death Foretold: Prophecy and Prognosis in Medical Care.  Yet, he says while "physicians are superbly trained in diagnosis and treatment, they know less about, ignore, and often actively avoid the serious business of predicting the moment of death".

Professor Christakis was one of the speakers at a conference earlier this month entitled "Prognosis and Preparation", organised by King's College, London, as part of its year-long symposium "The Art of Dying".  "Prognosis is a skill that every respectable physician developed a century ago, but it is now virtually ignored in medical education and research," he warned.  Instead, when pressed to provide a prognosis, doctors frequently practise "ritualised optimism", fearful that telling the truth will be a self-fulfilling prophecy.  His research shows that prognoses are routinely over-optimistic, with doctors predicting that terminally ill patients will live 5.3 times longer on average than they actually do.  Other researchers have shown that, where possible, doctors remain silent. Cancer specialists withhold information on survival from two out of three patients.

This is, of course, done with the best of intentions.  Doctors are rightly concerned about keeping a patient's spirits up.  A recent study in the BMJ found that cardiologists' "major fear" in delivering a prognosis to people with terminal heart failure is "saying the wrong thing and the patients 'losing faith' in their professional carers, whereas the general-medicine doctors did not want to see the patients give up the fight for life".  However, the medical profession's reluctance to be realistic about prognosis makes a major contribution to the tendency to overtreat patients in the final days.  This mesh of half-truths and white lies, backed up by stories of miracle cures and "cautionary tales" of patients given six months to live who attend their doctor's funeral 20 years later, "regularly tilts both patients and their doctors in favour of tests and procedures at a point when no reasonable gain can come of them," wrote one American oncologist last month in The New Yorker magazine.

Even so, the issue is more complex than truth versus well-meaning obfuscation.  In America, obtaining a clear prognosis has become a big issue, but that could have been driven more by financial than humanitarian considerations.  Baroness Finlay of Llandaff, another speaker at the King's College conference, warned: "This should not be imported wholesale from the US, where cover for hospice care is only available to those who waive the right to cover for curative treatments.  It is a practice that may be dictated less by the interests of the patients and more by the health economics of the Medicare system."  She believes that last-minute treatments can sometimes be very valuable.  "I certainly see people who benefit enormously from fairly unpleasant treatment that can extend their lives by only a few weeks," said Baroness Finlay, who is Professor of Palliative Medicine at the University of Wales.  One woman, she said, lived an extra six weeks and during that time talked more with her husband than in the whole of their marriage.  "It would have been a tragedy if she had not been treated."

But other doctors are convinced that NHS treatment in the final months of life often fails patients.  Last year, Professor Karol Sikora hit the headlines when he appealed to colleagues to "return to dancing with the angel of death and not fight a war on cancer".  Doctors, he said, frequently "persuade patients to have expensive chemotherapy because of the exciting challenge of battling the disease even when there is little hope of success... so that they frequently endure third, fourth and fifth types of chemotherapy by which stage one really has to say 'That's enough.'"

So to treat or not to treat is far from a clear-cut decision.  But at least in the case of cancer patients, if the option of further treatment is rejected, there is usually the option of palliative care.  However, if you are dying of something else, your choices are far more stark.  Less than 5% of referrals for palliative care have a non-cancer diagnosis.  Terminally ill heart-failure patients – a disease of the elderly, which affects 7 out of 10 people aged 80 to 89 – experience social isolation and increasing disability, frequently under the care only of their GP, according to a study in last month's BMJ.  The last few months of these patients' lives can be grim.  They are typically spent being shunted from hospital to community and back again.  Repeated admissions to different consultant teams are common, and patients' medical notes sometimes arrive on the wards after the patient had been discharged or died.  Their final days are likely to be spent in intensive care, still unprepared for what is to come.

Change is coming – but it's slow.  Hospices are still largely supported by charities, targeted at cancer patients – and access to hospices is skewed against the elderly, as well as those from deprived areas and from minority groups.  But palliative care is now taught routinely at medical schools and to junior doctors.  At Southampton, for instance, it's part of the core curriculum, with lectures and workshops on care of the dying throughout the undergraduate course.  And the National Institute for Clinical Excellence is due to issue its first draft guidelines on palliative care for cancer patients next month.

But for real change to come about, end-of-life care will have to be taken much more seriously than it is currently at the level of policy and practice.  Ideally this will be combined with an end to seeing death in purely medical terms.  That is the idea behind the King's College lecture series, which includes contributions from the arts, social scientists and humanities as well as clinicians.  "Focusing on death isn't necessarily depressing," says Irene Higginson, Professor of Palliative Care and Policy at the college.  "It can encourage creativity and make a good life more achievable – and as the end approaches, it means doctors and patients can be more open with each other and thereby achieve a more humane, holistic system of care."

This is an edited version of an article that appears in the December issue of the newsletter Medicine Today (www.medicine-today.co.uk)

Source: The Independent [UK] 27 November 2002

Saying Goodbye

Things You Can Do For Your Loved One

	Hold his/her hand
	Keep a diary
	Write a poem, make a sign, draw a picture
	Bring a picture of yourself, the family, or pet
	Sit quietly at the bedside and hold hands
	Read to them, tape a message
	Remember, patients who have a breathing tube or trach cannot talk, but they can still hear your voice.  You can talk to the patient (even if the patient appears to be asleep) about the weather, what's going on at home, in the community, or the world.  Remind the patient of the day, date, and time.
	Provide reassurance.  Let the patient know things at home are under control, for example: the pet/home/children are being watched by...  Let the person know you and/or the family are doing okay; for example: getting enough rest, taking breaks, et cetera.
	If you wish, the nursing staff will involve you in the cares; ask staff what you can do.  For example: swab the mouth, vaseline the lips, lotion dry skin, sponge bath, cool cloth to the forehead, exercises - range of motion, et cetera.
	Let the nurses know about any of the patient's personal habits/preferences.  For example: nickname, hobbies, favourite music/tv programs, likes or dislikes.

Source: news.bbc.co.uk Friday 6 October 2000

Not Doing Her Job?

Today a nurse's aide has to take a 3-month course to become certified, but back then it was just on-the-job training.  The director of nurses was on the new girl's case right from the beginning: "It's not your job to listen to their problems, read to them, or hold their hand," she said.  "We've got social workers and volunteers for that.  Your job is to empty bedpans and get the clients out of bed, washed, dressed, and down to the dining hall.  And those things won't get done if you spend your time mollycoddling just one."

But the new aide felt sorry for the lost souls in the nursing home, many of whom had few or no visitors and seemed to be just waiting to die.  She hurried through her duties with some so that she could furtively give individual attention to others who needed it more, and her monthly evaluation reports were always unsatisfactory as a result.

Finally, she was dismissed for "outrageous behaviour and neglect of her duties."  What she had actually done was this: she got into bed with an elderly man who was dying all alone, with no family or friends to comfort him, and she held him until he died.

Arnold Perrin
Union, Maine

Source: thesunmagazine.org The Sun Magazine "readers write: Going to Bed" June 2001

Footprints in Time

Supposedly, an old lady died in the geriatrics ward of Ashludie Hospital, a small hospital near Dundee, Scotland.  It was felt she had nothing of value but later, when nurses went through her meagre possessions, they found a poem.  It is said to have so impressed the staff that copies were made and distributed to every nurse in the hospital.  It is further said that one nurse took her copy to Ireland where it appeared in the Christmas edition of the Beacon House News, magazine of the North Ireland Association for Mental Health.  Since the poem was anonymous, I suspect it was written by a nurse or relative rather than an old lady.  I have been able to find nothing to verify the authenticity of its supposed source - I suspect its origin just made a good story.  I edited it a bit since I didn't really believe I was disrespecting anyone real.

Say What You See

What do you see, nurses, what do you see?  What do you think of when looking at me?
A doddering old woman who's not very wise, uncertain of habit, with faraway eyes
Who dribbles her food and makes no reply when hearing your loud-voiced, "I do wish you'd try!"?
I seem not to notice the things that you do and forever am losing a stocking or shoe.
Though I may resist, you still do as you will with bathing and feeding as I'm "over the hill."
Is that what you're thinking?  Is that what you see?  Then open your eyes, 'cause you look not at me.

I'll say who I am, I who sit here so still, as I do what you bid me, as I eat at your will.
I'm a small child of 10 ...with a father and mother, brothers and sisters who love one another;
Or a girl of 16 who has wings on her feet, one who dreams of the day when her lover she'll meet;
Or a bride at just 20 - my heart gives a leap to remember the vows that I promised I'd keep.
Five years have passed: I have young of my own; they love me and need me; it's pleasant at home;
Now a woman of 30, my children grow fast; these days are the best and I want them to last.

At 40, gone are the young sons I've borne, though my partner beside me will see I don't mourn.
At 50, once more babies play 'round my knee; again we know children, my loved one and me.
But dark days befall me!  My husband is dead!  I look to the future.  I shudder with dread
For my sons are all busy with lives of their own.  I reflect on the years and the love that I've known.
I'm now an old woman who finds Nature is cruel; her joke is that, old now, I seem like a fool.
This body does crumble, grace and vigour depart - but inside, unwrinkled, there still beats my heart.

Deep within this old carcass a young girl still dwells and sometimes, in private, my battered heart swells.
I remember the joys, I remember the pain - I can't let myself feel my life's been in vain.
I think of the years, all too few, gone too fast, and accept the stark fact that there's nothing will last.
You, too, may face loneliness much as I do - one day you may feel no one sees the real you.
Put yourself in my place, know it's kindness I need.  It won't be long now 'til my soul becomes freed.
Open your eyes, nurses, open and see not this feeble old woman - look closer, see ME!!

Source: 1 bazillion places on the Internet

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