Thursday, July 23, 2009

"Dying Together- The Euthanasia of Sir Edward and Lady Downes"

"The son of one of Britain’s most respected musicians told yesterday how he wept as he watched his father and mother die hand in hand at the Dignitas suicide clinic in Zurich. Distinguished orchestral conductor Sir Edward Downes, 85, and his 74-year-old wife Joan died from barbiturate poisoning as their children sat with them. Lady Downes had terminal cancer of the liver and pancreas while her husband was nearly blind and increasingly deaf.

Their son Caractacus, 41, said: ‘They drank a small quantity of clear liquid and then lay down on the beds next to each other. ‘They wanted to be next to each other when they died. They held hands across the beds. Within a couple of minutes they were asleep and they died within ten minutes."

"Was there a duet playing in the back of his mind, I wonder, when Sir Edward Downes, the former conductor of Britain's Royal Opera, held hands with his wife of 54 years and drank the poison with her? Wagner maybe, or Verdi's Aida, one lover condemned to die, the other choosing to follow rather than live half a life, all alone.

The story of Sir Edward's "death pact" was at first sight an irresistible love story. His wife Joan, 74, a former ballerina, had a diagnosis of terminal liver and pancreatic cancer; because assisted suicide is illegal in Britain, they traveled to a Zurich clinic, where, for a fee of about $7,000 per patient, the group Dignitas arranges for death by barbiturate. "They drank a small quantity of clear liquid and then lay down on the beds next to each other," their son Caractacus said. They fell asleep and died within minutes, he reported, calling it a "very civilized" final act.

Civilized, in this case, is a relative term. The deaths are typically videotaped, to protect Dignitas' doctors and nurses from prosecution for in any way coercing the patient. While Dignitas claims to be nonprofit--under Swiss laws, the most liberal in the world, you may assist in a suicide but not profit from it--its finances are less than transparent. The "clinic" over the years has moved between apartments, hotel rooms, a camper van. But none of that is what made the story so confounding, at a time when the tensions between private rights, public costs and first principles have never seemed so fierce.

The problem is that Sir Edward, while in failing health at age 85, was not dying. His eyesight was nearly gone, his hearing was weak, and he faced the prospect of life without his soulmate. But sorrow is not grounds for a doctor to assist in a suicide in most places that allow it. Nor is despair. The Netherlands permits euthanasia for those suffering intolerable pain; Oregon requires two doctors to confirm that the patient has less than six months to live.

Some euthanasia activists, including Dignitas founder Ludwig Minelli, believe in death on demand. "If you accept the idea of personal autonomy," he argues, "you can't make conditions that only terminally ill people should have this right." Autonomy and dignity are precious values; the phrase sanctity of life can sound sterile and pious in the face of profound pain and suffering. But Minelli is arguing for much more: that autonomy is an overriding right. This view rejects the idea that society might ever value my life more than I do or derive a larger benefit from treating every life as precious, to the point of protecting me from myself.

This matters because we are about to have a fateful conversation about the end of life. We can talk about reform and prevention and digital medical records, but it will remain true, as President Obama observed, that "those toward the end of their lives are accounting for potentially 80% of the total health-care bill." If we really are going to change how we spend money on health, it means we must change how we spend money on death.

We allow for the removal of feeding tubes, the withdrawal of respirators, the replacement of aggressive treatment with palliative care; these can all be wise and merciful choices. But each step forward gets a little more slippery. Is there some point, visible in the cloudy moral distance, where the right to die becomes a duty to die? We don't need to set Grandma adrift on her ice floe; the pressures would be subtle, wrapped in the language of reason and romance--the bereaved widower who sees no reason to try to start over, the quadriplegic rugby player whose memories paralyze his hopes, the chronically ill mother who wants to set her children free. Already in Oregon, one-third of those who chose assisted suicide last year cited the burden on their families and caregivers as a reason. A study in the Netherlands found that one in four doctors said they had killed patients without an explicit request--including one doctor who believed that a dying Dutch nun was prevented from requesting euthanasia because of her religion, so he felt the just and merciful thing to do was to decide for her.

The growing traffic in "death tourism" is an indictment of a health-care system that seems to incentivize everything except the peaceful death to which we all aspire. But I'm not sure the solution is to invite Dignitas to open a clinic down the street from every hospital. Advances in palliative care mean that those last years of life do not have to be a moral, medical and financial nightmare. I respect Sir Edward's right to make what his manager called a "typically brave and courageous" choice. I just wish he'd had better choices."

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