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.”
[snip]
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.
Oh Cynthia. After reading this post I am so sad and must say that I agree with your assessment. As soon as I read the first bolded sentence, that he is in Australia and in a “nursing facility” I had a fairly clear idea of the exact reasons he does not want to go on, the poor guy. Imagine being stuck in a place where the bare minimum is all that is required of the staff, and you are not afforded the advanced medical equipment that is so readily available here. My heart goes out to him, and I hope that if he continues on this path that he has (ostensibly) chosen, that it is quick and peaceful, and that God be with him. Working in long-term care I have a certain insight into the mental hardships some endure when they feel that their life is over, due to feelings of uselessness or inadequacy. Like you learned with your experience, it is so vital to make it possible for people to contribute and LIVE! No matter what the condition or age. Thank you so much for bringing this to the blogosphere, I hope it makes the rounds. Have a great evening.
Quadriplegic may not starve himself | The Australian
Poor bloke. Sounds to me like he does want to live, he just needs a reason.
Jennyinoz,
Thank you for the link. He says he can be dissuaded and wants to speak with a palliative care doctor. That is the appropriate specialist for end-of-life care decisions. If he has been offered and rejected rehab care and assistive devices, and has been evaluated to ensure he does not wish to die due to the treatable disease of depression, then palliative care with its measures to reduce pain and anxiety is appropriate.
HOWEVER, the doctor who could provide him with the knowledge and care he needs to provide him with a meaningful and rewarding life as a quadriplegic is a physiatrist (rehab specialist). He also could use a consultation with a rehab engineer who could customize equipment for him. And a consultation with an occupational therapist expert in the use of assistive devices, computer equipment and software, as well as environmental adaptations, also would be helpful.
By coincidence, the movie The Bone Collector is on tonight and it shows an awesome array of assistive devices to empower a quadriplegic man. It shows what is possible. Until people in Australia reach out to Mr. Rossiter to ensure he has been offered appropriate care and advice from a physiatrist, rehab engineer and occupational therapist, and the equipment he would need to resume his profession via computer and the Internet, then the right avenues of inquiry into his wish to die have not been investigated. And he is choosing to die because he is being denied appropriate care. Which is wrong.
Cynthia
I think I will eventually know how Mr. Rossiter feels. As my combination of age and Parkinsons progresses I’ve had to give up both hunting and precision shooting. This year or next I shall have to givve my bench rest/varmint rifle to one of the boys, sigh. I can no longer hold it steadily enough to make tiny groups and my fingers soon will be to where I cannot handle the four ounce trigger.
So, I can still read and I’m teaching myself cooking. Stirring is easy, I stick the spoon in and try to hold it steady. I can easily see me offing myself out of pure boredom if I lived so long as to be unable to do anything for myself, though.
I would not have believed Australia would be so cheap as to deny Mr. Rossiter the wheelchair and computer gear he needs to keep himself interested in living.
.-= Peter´s last blog ..Nothing Much To Say. =-.
One of the more excellent pieces I have ever read on the complexities involved in end of life decision making. I will catalog it for future use in my work as a hospice visitor.
Thank you!
SYD
.-= SYD´s last blog ..And Now, for Something Completely Different…. A Little Downdressing for da Netroots Who Can’t Seem to Remember Which Side Their Bread’s Buttered On =-.
SYD,
Thank you — I’m glad my piece is helpful. Please keep checking this site because in a few weeks I will have my e-book on how to make end-of-life care choices ready. I will be teaching people how to navigate the legal and medical system and providing information people usually don’t receive. I worked and fought for my late life partner to have a happy and meaningful life until her natural death, so I know what goes into that. I also know how evil the “right-to-death” movement is because they withhold information people need about the care and assistive devices and, at the end, hospice care that would support their will to live and their ability to have lives of meaning and purpose. The hospice movement plays a vital role in giving people both more time and higher quality time at the end-of-life, so I will educate people about that, too.
What is a hospice visitor? Does that mean you are a nurse, or a volunteer, or what?
Cynthia
I thought I posted this; if this is a duplicate, I’m sorry.
That is an excellent piece. Have you ever read “Johnny Got His Gun?” It’s classified as an anti-war novel. It is about a young man who is wounded in war; he is blind, deaf, has a trach tube, no arms and no legs. But he has his brain. It takes awhile for him to figure out what is going on. Eventually, a nurse figures out how to communicate with him by tapping the morse code on his forehead and he uses his head to tap out words. He figures out something he can do; he wants to be displayed where people can see him as a detriment to war. They refuse to allow it; it is agains the rules. That pretty much does it for him. Anyway, without getting into the anti-war thing, what it does show is that there is a purpose for everyone. Thinking of it that way, even someone totally disabled has something to offer someone; perhaps the person taking care of them needs to feel needed or needs a purpose and having this soul to care for provides fulfillment for them. What kind of society would we be with no old people, no disabled people? They are all here for a purpose and maybe that purpose is to teach the rest of us something valuable.
.-= Puma for life´s last blog ..Weekend Meditation: Zen Waterfalls =-.
Hi Cynthia,
I am a retired nurse who is now a volunteer. So I just call myself a “visitor.”
What I do is to visit folks who are living in nursing homes, and don’t get much one on one human interaction. I read to them or tell them stories. Or sing to them. Or give them a hand massage. Sometimes I bring my cat along to visit. (She is certified to do so via the Delta Society.)
Anyways… my job is just to “be there.”
Occasionally I advocate for an assistive divice. Like a hearing aid… to help with communication.
I do not believe that all “right to die” groups are deliberately withholding information. But…. I do believe that many of my “clients” get overlooked when the assistive divices are distributed. Why? Cuz they don’t have family to stand up for them and say “hey, he needs one of those…” In some small way, I can be that “family.” Cuz I visit and, while I am there I see what the person could use to improve quality of life….
Thanks for asking….
I look forward to your book!
.-= SYD´s last blog ..Excellent Essay on End of Life Decision Making by Cynthia Yockey =-.
SYD,
Thanks for answering and the post. And thanks for listing me in your newsfeed — I am putting your blog in my blogroll.
Cynthia
I don’t trust any single news report, but I also don’t imagine that I’m capable of discerning the “truth” by reading between the lines of that same single news report.
Argument by anecdote doesn’t work. “I know someone who… ” is not a solid foundation for general principles. Just because one person in a particular situation finds life worth living doesn’t mean that someone else in a similar situation will also. Some healthy, able-bodied people in materially comfortable circumstances want to die.
Read about Ramon Sampedro (http://tinyurl.com/6ntj6), another quadriplegic. He was diligently cared for at home by a large and loving family. He could answer the phone, write letters and poetry, and paint, using devices of his own design. He longed for death, and he finally got it, with the help of friends, but away from his family.
Before writing this off as another distortion of the mainstream media, I suggest the film Mar Adentro (The Sea Inside), which is of course a dramatization, but I think reflects the situation well, based on my reading (in the original language) of Sampedro’s book, Cartas Desde El Infierno (Letters From Hell).
Sampedro’s choice provides no general prescription. The decision to end one’s life can only be an individual choice. And just because “I know somebody who… ” made whatever choice doesn’t mean I know what someone else’s choice should be.
Karen,
If you had bothered to read my post carefully, you would have noted that I do not object to a quadriplegic’s right to refuse medical care even though this will result in death — because in the U.S., we all have that right — BUT I do object to quadriplegics effectively being coerced to suicide by the refusal of society to provide the care, tools and accessible environments that make life meaningful and worth living.
I do not know why you were unable to put those ideas I expressed into the following sequence as a general prescription for people with quadriplegia: (1) provide the care, tools and environments that make life meaningful and worth living; and (2), if the care, tools and environments all are provided and the person with quadriplegia still wants to refuse medical care in order to die AND depression has been ruled out THEN that person has the same right every adult in the U.S. has to refuse medical care even if that decision results in their death.
You also are dismissive of my years of experience caring for my life partner as an “I know someone who …” anecdote. That is just crazy.
Is the bottom line here for you that you learned more from a book and a movie than I learned from years of caring for my quadriplegic life partner about the things that go into making someone in such a vulnerable position want to live?
I did not say I know what anyone’s choice for their life should be. I clearly stated that the choice for a person with quadriplegia is only freely made in circumstances where the care, tools and environment for meaningful independent living have been provided. A society that does not provide these things is forcing vulnerable people toward suicide. And the Australian man who decided to die had not been provided those things or he’d have been able to read a newspaper.
For your failure to connect with what I actually wrote and your dismissal of my life as “argument by anecdote,” your comment is easily the most crazy and offensive one on this blog to date.
Cynthia
Not much different in our private insurance hell when it comes to getting ignored unless someone is at the hospital all the time. So, it isn’t just because there’s a gov’t plan involved!
Older single women (like me) are the ones getting it the most, I guess…the men die off or have wives to advocate for them.
The Dems will go down and the Repugs will be back in and be screwing us in their own special way. Remember, it was their Medicare Part D that passed and they were cutting Medicare payments. The Dems followed along on D, then talked about correcting it…but then turned around and said it was too complicated to undo. They once fought to keep Medicare payments to doctors intact, but that reversed when they got back into power.
Face it, the Republicans have won on all fronts and the little guy is left holding the bag.
.-= InsightAnalytical-GRL´s last blog ..Nobody Listening in Washington? Then Send a Message to Gliese 581d…It May Work Out Better in the (Very) Long Run =-.