My late life partner, Margaret Ardussi, before we met, was a champion swimmer, ballet dancer, hiker and mountain climber. However, she could only limp a couple of blocks when I met her and became paralyzed from the chest down due to her MS in April 1992. Within a couple of years she lost most of the use of her hands, so Margaret was quadriplegic due to multiple sclerosis the last 10 years of her life. I cared for Margaret throughout our 20-year relationship and she died under hospice care in our home with me at her side on Dec. 7, 2004.
So I know a little bit about coping with quadriplegia.
The most important thing I know about coping with quadriplegia, or any progressive, debilitating and ultimately terminal illness is what makes people want to live:
- People you love who make you feel loved and needed.
- Power to do things you want to do and have your choices for yourself honored.
Feelings of meaning and purpose to your life help, too.
And I am positive that the story that came out yesterday of a quadriplegic man in Australia winning the right to refuse food and fluids in order to die is being reported by people who have NO IDEA about what are the right questions to ask to see if this man has not been been driven to this decision by a number of circumstances and therefore has not really made it of his own free will.
Here’s how CNN is reporting it — I have boldfaced the points I think are the most telling:
An Australian high court ruled Friday that a quadriplegic man has the right to refuse food and water and can be allowed to die, a rare legal finding that some see as a major victory for right-to-die campaigners.
The ruling means that the nursing facility in which Christian Rossiter has lived since November 2008 cannot be held criminally liable for allowing the patient to die, the Supreme Court of Western Australia said.
“I’m happy that I won my right to die,” Rossiter, 49, said afterward. But he added that he will further consult with a doctor because he may change his mind.
A leading Australian right-to-die advocate called the ruling a significant victory.
“I don’t know that many people will want to die this way. But for people who do, it’s a very important decision,” said Dr. Philip Nitschke, founder and director of Exit International, a leading global voluntary euthanasia and end-of-life advocacy group.
Nitschke noted that Rossiter’s case is significant because his mind is fully functional.
“This is the first time that it’s come up with a person that’s rational and lucid,” Nitschke told CNN. “This is unusual. It’s very rare.”
Chief Justice Wayne Martin noted that distinction in his order, saying, “Mr. Rossiter is not a child, nor is he terminally ill, nor dying. He is not in a vegetative state, nor does he lack the capacity to communicate his wishes. There is therefore no question of other persons making decisions on his behalf.
“Rather, this is a case in which a person with full mental capacity and the ability to communicate his wishes has indicated that he wishes to direct those who have assumed responsibility for his care to discontinue the provision of treatment which maintains his existence.”
Rossiter has suffered a series of injuries since 1988 that have left him with limited foot movement and the ability to wriggle only one finger. He is fed through a stomach tube. He relies on staff at the Brightwater Care Group nursing facility in the city of Perth for such routine care as regular turning, cleaning, assistance with bowel movements, physical and occupational therapy and speech pathology.
Australian law gives patients the right to refuse life-saving treatment, but helping someone commit suicide is a crime that can carry a life prison sentence. The Brightwater nursing facility sought the ruling to make sure it would not be held liable if it complied with Rossiter’s request to stop all nutrition and hydration, except to be given enough liquid to make it possible to take pain medication.
Rossiter attended the hearing in a wheelchair, breathing through a tracheotomy tube in his throat. He told the judge he wants to die.
It’s a point he has been making publicly.
“I can’t move,” Rossiter said in a televised interview this week. “I can’t even wipe the tears from my eyes. And I’d like to die. I’m imprisoned in my own body. I have no fear of death. Just pain.”
Rossiter pointed out in a recent interview with the PerthNow news outlet that he once led an active life.
“This is living hell,” he is quoted as saying. “I used to be a cyclist, I used to be a keen walker. I bushwalked around the world. … I’ve rock climbed in Yosemite Valley in California up very steep cliffs. I’ve got a degree in economics and now I can’t even read a newspaper, I can’t turn the pages.”
Rossiter joined the Exit International right-to-death organization about three months ago, said Nitschke, who talked with him before the hearing.
Frankly, I think Exit International went to work on Rossiter to get him to want to die because he would make great case law they can use as precedent to induce more quadriplegics to kill themselves.
Here’s the thing: Rossiter is in a nursing home ONLY because of the number of activities of daily living (ADLs, this is a term that is defined in both medicine and law) he requires. He is intelligent and lucid. He has an education and a profession. There are assistive devices that would make it possible for him to read anything he wants. A computer with voice recognition software and access to the Internet would let him work and communicate with the world. A sip-and-puff wheelchair would allow him freedom of movement. (In the U.S., thanks to the Americans with Disabilities Act, he would be able to use public transportation, especially in large cities. He also would be able to visit public accommodations like stores, theatres, museums and parks.)
Would you like an example of someone who is a quadriplegic and is able to have a productive, fulfilling and lucrative life? CHARLES KRAUTHAMMER IS A QUADRIPLEGIC!!!
I will grant that to have a fulfilling life a quadriplegic also needs an assistant, in addition to an appropriate wheelchair and living and working environments that meet accessibility regulations. But these things exist. AND ROSSITER DOESN’T HAVE THEM. Instead, he has been jailed in a nursing home for the crime of needing too much help with his personal care requirements — his ADLs (bathing, brushing his teeth, etc.). It looks to me like he has been deprived of the assistive devices that would allow him to be productive and have a fulfilling and meaningful life. He has been deprived of the assistance and transportation that would allow him to go places he would find fulfilling and interesting.
What does all this mean?
Rossiter doesn’t want to die because he has quadriplegia. Rossiter wants to die because he has terminal boredom — a condition that can readily be cured.
And here’s my proof that Exit International is a group of death junkies who work to destroy the social supports for the disabled, the frail, the chronically ill and the elderly — all of the people they consider unworthy of a society’s duty to empower and care for as individuals — instead of doing the simple things that would make Rossiter’s life filled with joy and meaning, they went to work on him to get him to want to die so he would kill himself and they could make it look like their hands are clean. Well, they aren’t.
While I agree with U.S. law that nutrition and fluids provided through a feeding tube are medical treatment that people must be as entitled to refuse as any other medical treatment, I know it is possible for quadriplegics to have long and rewarding lives IF THE SYSTEM IS SET UP TO ALLOW IT. Our duty is to ensure that system is available. Only then is it truly a free will decision by a quadriplegic to refuse nutrition and fluids through a feeding tube in order to die. But absent that, it is not a right-to-die case, it is a case of murder — perhaps a death by a thousand cuts, but murder nonetheless.
Update, 8/16/09: Mark Steyn at National Review Online has some worthwhile observations — here’s a sample and I recommend reading the whole piece (I boldfaced the points I think are the most important):
The problem with government health systems is not that they pull the plug on Grandma. It’s that Grandma has a hell of a time getting plugged in in the first place. The only way to “control costs” is to restrict access to treatment, and the easiest people to deny treatment to are the oldsters. Don’t worry, it’s all very scientific. In Britain, they use a “Quality-Adjusted Life Year” formula to decide that you don’t really need that new knee because you’re gonna die in a year or two, maybe a decade-and-a-half tops. So it’s in the national interest for you to go around hobbling in pain rather than divert “finite resources” away from productive members of society to a useless old geezer like you. And you’d be surprised how quickly geezerdom kicks in: A couple of years back, some Quebec facilities were attributing death from hospital-contracted infection of anyone over 55 to “old age.” Well, he had a good innings. He was 57.