Dying Well Means Dying At Home

There should be a statutory, civil right to die for those whose lives are made unbearable by incurable illness. It is an inherent contradiction to be both a libertarian and simultaneously against allowing others to end their lives of pain on their own terms.
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"Count no man happy till his end is known." Herodotus

This was true in ancient Greece 2500 hundred years ago. It is even more true today -- aggressive end-of-life hospital care, the lack of sufficient palliative care, and unduly restrictive assisted suicide laws make it impossible for most people to die with dignity.

There is no worse death than a hospital death. Dying well means dying at home. This requires preparation and preparation requires recognizing that dying is a necessary, and indeed desirable, part of life.

The ancient Greeks understood the value of death. Aurora, goddess of the dawn falls deeply in love with a mortal man and successfully prevails upon the gods to grant him immortality. But Aurora carelessly forgets to request also that he be granted the additional gift of perpetual youth. Cursed to live forever in a progressively diminished and painful state, his only unfulfillable wish is the death that is proper to the human condition.

Moral of story: None of us can ever cheat death and instead should strive for a good death that occurs at the proper time and in the proper place.

Doctors understand how impossible it is to have a good death when life is unnaturally prolonged under the horrible conditions that characterize our hospitals.Hospital deaths are lonely and fearful; tubes invade your body and monitors constantly bing; the environment is frantic, noisy, indifferent, brightly lit, and sleepless. You die among strangers with little chance to say goodbye to loved ones.

Most doctors protect themselves by preparing a simple living will that restricts 'heroic' medical measures and requests a peaceful death at home.

Preparing for a good death may be one of the best decisions you will ever make in your life. Surveys indicate that most patients say they also want to die at home, but only a small fraction ever realize this reasonable wish.

Once the ambulance is called, the chain reaction of modern medical mayhem becomes inevitable. There is a simple alternative. The terminally ill should be given palliative care at home (best done through Hospice), rather than going to the hospital.

Not only more pleasant and dignified, palliative care at home paradoxically also provides for greater longevity- perhaps because it reduces the substantial risks of medical mistakes and hospital superbug infections. In death, as in life, less is often more.

Our current way of death is cruel to the individual and wasteful to the society. We need to dramatically extend the accessibility and use of palliative home death while dramatically reducing the frequency of painful hospital death.

This will require a national re-education effort on death and dying directed to patients, doctors, nurses, hospitals, insurance companies, and political leaders. Let people learn about palliative care and also see documentary footage of what it's like to die in the hospital.

Hospice needs better funding and wider availability. Extreme end-of-life medical and surgical procedures should be exposed as futile, unkind, and unnecessary. We should go back to the ancient and time honored practice of dying at home with a warm and loving send-off from close family and friends. We should avoid spending our last minutes on earth among strangers-doctors, nurses, and hospital staff.

This best solution for most people with terminal illness is compellingly obvious and shouldn't be very controversial. A much smaller problem in numerical terms (but much tougher to resolve) is what alternative choices should be permitted for people who suffer from a chronic, non-terminal, illness that is causing extreme and incurable pain and/or disability. Most people will always choose (for personal, family, and/or religious reasons) to soldier on even in the worst of circumstances. But some long passionately for physician-assisted death to release them from an unbearably painful life.

There are five quite different factors that make assisted death in the non-terminally ill a much more complicated issue than palliative care for the terminally ill.

First off, and most regrettable, assisted death has become a religious, political, and ideological football- objected to on 'sacredness of life' grounds. The people and politicians who fight most energetically against 'right to die' legislation cannot have had much experience with the extreme and insoluble suffering that occasionally accompanies chronic, severe illness.

The second objection -- based on practical, clinical grounds-has much more merit. Many people who feel life is not worth living today may feel differently about life tomorrow -- especially if they receive more adequate pain relief, social and financial support, and counseling. Suicidal feelings are usually held ambivalently and may change dramatically from month to month. No one should choose to die based only on how he feels on his worst day.

The third objection also has some merit -- the fear that ill people may feel pressured to choose death less from their own personal preference and more from their imagined or correctly perceived sense that their family experiences them as a burden and would prefer them dead. This is the particular concern of those who represent the physically disabled.

The fourth objection arises from the tradition of medicine as a healing, not a killing, profession. Some question whether whether medical ethics should allow any doctor to assist in patient death and certainly no doctor should be compelled to do so if this violates his ethical or religious beliefs. But a growing majority of doctors now support right-to-die laws.

The fifth objection is that, even in those suffering from extreme illness, suicidal wishes may arise from a psychiatric problem and can be managed with psychiatric treatment. This is simply wrong. I have frequently encountered in others, and can readily picture for myself, situations where death becomes a completely rational and utilitarian choice. Life is a beautiful and precious thing, to be treasured and clung to -- except when it becomes an unending torture because of a terminal illness.

There should be a statutory, civil right to die for those whose lives are made unbearable by incurable illness. It is an inherent contradiction to be both a libertarian and simultaneously against allowing others to end their lives of pain on their own terms.

The 'right-to-die' statutes that are becoming increasingly common in the United States and other countries are a good and necessary step forward in civilizing death and making it more humane. Of course, they must be written with great care to avoid abuse and hasty judgements and they must be implemented judiciously and with strict oversight.

We must protect the welfare of those who want to soldier on, but also the civil right to a decent death for those whose pain is chronic, incurable, and insufferable.Experiences teaches that, once on the books, the statutes work well and the issue becomes less controversial.

In 17 years, Oregon has had only 752 deaths allowed under its statute, with an average age at death of 71, most dying from cancer, and no law suits. The Netherlands has a 30 year successful experience.

Palliative care and right-to-death can quickly become an integral part of good, routine medical practice. Far better than the crazy US end-of-life mess that is so painful for our patients and so wasteful for our society.

Allen Frances is a professor emeritus at Duke University and was the chairman of the DSM-IV task force.

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