Paralyzed accident victim fights for right to die
 

Man, 27, battles Froedtert Hospital to remove ventilator
By Tia Ghose of the Journal Sentinel
Nov. 28, 2010 |

Dan Crews has been a quadriplegic since he was in a car accident at age 3. For the last year and a half, Crews has battled Froedtert Hospital in Wauwatosa to remove his ventilator.

The 27-year-old Antioch, Ill., resident has been a quadriplegic since he was in a car accident at age 3. Paralyzed from the neck down, he can speak and eat, but his diaphragm muscles cannot move air through his lungs.

A mechanical respirator, a clear box filled with pumps and tubes, connects to his throat and breathes for him.

Every day, Crews lies in bed for hours, staring at posters of cheerleaders, watching sports he will never play. When he wants to make a call or use the computer, he asks his nurses to bring him the telephone, which he pecks at with a stick he holds in his mouth. When he's thirsty, he calls for a nurse, or for his mom, Cheryl Crews, who lives with him. They bring a drink and hold the straw up to his mouth for him as he sips.

"I have no friends. I have no education. No education prospects. No job prospects. I have no love prospects," he said. "All I want is to no longer live like this."

"I feel like I'm the only person in the country who does not have a way or an option to kill myself," he said.

For the last year and a half, Crews has battled Froedtert Hospital in Wauwatosa to remove his ventilator. Hospital psychiatrists and mental health professionals say he is depressed and must be treated for it before they will consider such an irrevocable step, according to his medical records. Crews said his desire to die stems not from his depression, but from his poor quality of life and the low odds that it will ever improve.

Crews' desire to die is not uncommon for people with spinal cord injuries, who often struggle to gain control over their own lives. Their suicide rate is two to six times that of the general population, depending on their specific situation. Their inability to end their lives themselves often compounds their sense of helplessness.

Yet stories like Crews' are troubling to disability rights activists. They argue his quality of life doesn't have to be inherently bad; rather, they say, society doesn't provide the resources for Crews and others to live a satisfying life.

On paper, those who wish to refuse life-sustaining treatment have more than 100 years of legal precedent behind them, said Norm Fost, a bioethicist at the University of Wisconsin-Madison. In hospitals around the country, dying patients and their family members quietly - and legally - make the decisions to forgo surgeries, remove feeding tubes and turn off ventilators.

"Courts have nearly universally recognized that right," said Laura Leitch, general counsel to the Wisconsin Hospital Association.

But Crews isn't a cancer patient in hospice care. Other than needing a ventilator to breathe, he is young and has no other life-threatening conditions.

Legally he still has the right to discontinue treatment, Leitch said. But in practice, it can be difficult for non-terminal patients to refuse lifesaving treatment.

Before doctors honor a patient's wishes, they must determine whether the patient is competent, and hospitals have broad leeway in determining competency, Fost said. Even if a patient is deemed competent, there is no law requiring a specific hospital or doctor to withdraw treatment, he said.

"We don't like to see people with disabilities decide not to go on," said Art Caplan, a bioethicist at the University of Pennsylvania. "And people will put up road blocks and try to slow that process in every way they can."

Crews received a $4 million settlement after the car accident that left him paralyzed 24 years ago. He graduated from high school, earned an associate's degree from the College of Lake County, a local community college, and longed to be a criminal prosecutor.

But once he realized the logistical difficulties of schooling away from home, he let his courtroom dreams slip away, he said.

The money allows him to employ two nurses and live with his mother in his own house. But he spends all day watching television - a few hours in the morning in bed, and a few hours sitting upright in a broken chair. Most days he sees only his nurses and his mom. (Crews' parents are divorced and his father is remarried).

"The amount of money he received right from the start was designed for a 20-year life span, and already it's been 24 years. I don't think anybody thought he would make it this long," his father, Gerald Crews, acknowledged.

Crews wants to leave what's left of the money to his mother as a legacy.

"At least if I were gone, I know she'd have enough money to take care of herself for the rest of her life," he said.

Before the money runs out, his best bet was to apply for Medicaid and have the program pay for his nursing care. But to qualify, he would have to be broke. The one way to get around this requirement is to put his money in a special needs trust set up for the mentally and physically disabled, said Tom Wilson, an advocate at the Chicago-based Access Living, an independent living advocacy group for people with disabilities. That means a trustee would legally make his financial decisions.

"With my life being so guarded that I can't have much privacy, there's always people watching over me, I wanted one thing I control," Crews said.

And unlike in Wisconsin, Illinois Medicaid often denies requests for the 24-hour care he needs to stay in his home, so he risks being put in a nursing home, Wilson said.

Still, Crews recently put his money in a trust and is applying for Medicaid.

The possibility of removing Crews' ventilator was raised in a meeting June 1, 2009, with William Waring, his spinal cord rehab physician at Froedtert. Crews has gone to Froedtert Hospital for medical care since he was taken there by Flight for Life after his accident. Froedtert physicians declined to comment on his case; the rest of his medical history comes from medical records he provided.

Waring referred him to a palliative care team at the hospital. As part of that process, several mental health professionals were required to see Crews to determine whether he was able to make the decision. Initially, palliative care doctor Sean Marks wrote in patient charts an impression that Crews was competent.

After about a month, psychiatrists and psychologists expressed concern that his money troubles and desire to help his mother were clouding his judgment, according to his records. They also wanted to treat him for depression. Crews refused treatment. He said it wouldn't change his decision and he couldn't afford the hassle and expense of visiting Froedtert regularly for treatment, according to records. At that point, talks between Crews and Froedtert stalled.

For the next year, Crews considered moving to states with death-with-dignity laws, but was told he would need to be a resident for six to 12 months before they would consider removing his ventilator, he said.

In June, he initiated a hunger strike - one of the few ways he can choose to die, but one that is agonizingly slow and painful. After four days, his body began to fail, all his nurses quit, and his mother, distraught and unable to care for him, called Froedtert Hospital to get him admitted.

He finally resumed eating because he faced the possibility of having a feeding tube put in if he tried again, according to the medical records. Doctors at Froedtert told Crews he would need to have a year of counseling and treatment for depression before they would consider removing his ventilator; even then, they would not guarantee it, according to the medical records.

His father is torn. As a Catholic, he doesn't agree with Crews' wishes, he said.

"But from a father's point of view, I truly understand," he said. "I just think the life challenges have been mounting on him consistently to where, quite frankly, he's lost the will to live under the conditions he's in."

His mother does not want him to die. But she respects his right to make the decision. "I would rather the decision be his, and if he wants to (die), yes, I'll back him to the hilt; if he wants to stay, I'll back him to the hilt."



cont. below...

Re: Paralyzed accident victim fights for right to
 

In 1989, Larry McAfee, a Georgia engineer paralyzed in an accident, successfully argued before the Georgia Supreme Court for the right to have his ventilator removed. The state had put him in an institution, and McAfee deemed his dependent lifestyle not worth living.

Yet after winning his suit, he befriended a doctor at another institution, who persuaded him to give life another try. He found work, and was able to live independently for several years before dying of natural causes.

Some disability rights activists see the right to die as fundamental to independence. In the May 1991 Western Journal of Medicine, Andrew Batavia, a disability rights advocate who was instrumental in passing the landmark Americans with Disabilities Act, wrote that "people who believe they have no control over the fundamental decision to live cannot claim to have autonomy over their lives."

But many disability rights activists disagree. They say that right-to-die arguments are just veiled discrimination and are predicated on the assumption that disabled lives are not worth living.

"People who help people to die, like (Jack) Kevorkian, are heroes in some people's minds. He's a serial killer in my mind," said Wilson, of Access Living.

In one study, about 68% of people who experience a spinal cord injury are either very or somewhat satisfied with their lives. To independent living advocates, the underlying problem is the lack of autonomy and dignity afforded to patients with high-level disabilities.

"The reality is they shouldn't have to live that way, and we should provide the services that make people's lives bearable," Wilson said.

Those arguments are academic for Crews, whose discussions with Froedtert have stalled, and who is waiting to hear about his Medicaid. He rarely leaves the house because his motorized wheelchair is broken. He agreed to take anti-depressants a few months ago, but said they have not changed his outlook or wishes.

His mother said his discontent is plain to see.

"I can put myself into his shoes every day, and he's just not happy anymore," she said.

http://www.jsonline.com/features/health/110948384.html

Re: Paralyzed accident victim fights for right to
 

If we are not happy, we should end it?

Re: Paralyzed accident victim fights for right to
 

That is every competent adult's right.

Re: Paralyzed accident victim fights for right to
 

According to who?

Re: Paralyzed accident victim fights for right to
 

It is hard to pray thy will be done.

Re: Paralyzed accident victim fights for right to
 

Who decides who is competant?

Re: Paralyzed accident victim fights for right to
 

The Supreme Court, for starters. One could also argue it is an inherent right for all humans, just as we have a right to live.

Re: Paralyzed accident victim fights for right to
 

My goodness, this is SO painful to read. I attempt to put myself, mentally, into his shoes and even for just a moment, the thought is too much to bear. Regardless of any theological views of suicide, it's hard not to support his desires. I can't say mine would be any different.

Re: Paralyzed accident victim fights for right to
 

There are several different methods the courts use to decide competency. Given your "education", I am sure you are familiar with the methods used to decide it.

Re: Paralyzed accident victim fights for right to
 

That was my first thought, just of how painful this story is.

Re: Paralyzed accident victim fights for right to
 

I often wondered what my mother thought when she was in a similar state after a medical procedure. She was totally paralized on her right side, blind, had a 3 word vocabulary and was totally dependent upon others in order to survive. She was aware of her surroundings but was basically trapped in her body, unable to really communicate anything beyond her basic needs: hungry, thirsty, etc. The only way to communicate with her was to ask her simple yes/no questions.

Many times before the incident she stated that she did not want to be in such a situation like that. But she lived 10 years in that condition. It was horrible for everyone involved.

Re: Paralyzed accident victim fights for right to
 

I thought the laws varied from state to state. It must be so horrible to be in a situation like that. Bless his heart.

Re: Paralyzed accident victim fights for right to
 

I can't imagine not making the same decision if I was in his place. I feel like standing up and jogging around the block, being thankful for my working legs, after reading that story.

Re: Paralyzed accident victim fights for right to
 

I believe in God. God is the Almighty. I reject the libertarian phonies that say people are their own gods and have every right from ordering nurses to support their suicide to gay marriage and drug abuse.

Libertarians like your self want to bully hospitals and docs and make medical things be controlled and ruled by the political world.

Libertarians also claim they can solve problems and problems like this are too big for God to solve.

We need to keep lawyers and judges away from medical patients.

Re: Paralyzed accident victim fights for right to
 

God used a young man in a vegatative state to bring me to Him.
I thought that the young man was automatically heaven bound because of the situation he was in.
A friend of mine told me it would matter what condition his soul was in before the accident....this was a huge revelation to a Jewish girl who had no idea what Christianity really taught.

Whatever the end result is with this man, I pray his soul is prepared.

Re: Paralyzed accident victim fights for right to
 

I'll never forget visiting a friend of our family's who had been a very strong pastor and personality. He was shriveled up in a wheelchair, eyepatch, no vocabulary, no control over saliva.....it's been 25 years and that imagery won't go away. He was only in his 50's but the stroke had instantly taken everything from him. Even the most positive of thinkers would struggle with this. I've never been a "Why God?" type of guy, but remembering those moments with him gets me pretty close to asking.

Re: Paralyzed accident victim fights for right to
 

If saying something completely against AFF rules would cause you to reciprocate and then get us both banned, I'd be willing to take the fall just to get you to shut up. So how 'bout it....if I say something horrible to you, will you return like you did recently with DA? I haven't posted much lately anyway and I'll just happily take the week off. Deal?

Re: Paralyzed accident victim fights for right to
 

My daughter was just asking me, this morning, what was so great about Job getting everything back when he lost his children. "You can't replace your children." She wanted to know why God would do that to someone. That's a "Why God?" question for you! I have no idea.

Re: Paralyzed accident victim fights for right to
 

Or then again, it could just be up to God to show mercy on whom He will show mercy.

For God said to Moses, "I will show mercy to anyone I choose, and I will show compassion to anyone I choose." So receiving God's promise is not up to us. We can't get it by choosing it or working hard for it. God will show mercy to anyone he chooses. (Romans 9:15-16)

Re: Paralyzed accident victim fights for right to
 

Job is often a touchy subject for me. God put up Job in a bet with the devil? Killed his kids and having twice as many kids afterwards was supposed to be a consolation prize? I often side with the Job-parable-theorists...maybe just because I have personal issues with the story.

Re: Paralyzed accident victim fights for right to
 

Just ignore him NoW. I really don't know what goes through his head but it appears that a lot of his posts are aimed to instigate.

Re: Paralyzed accident victim fights for right to
 

I don't think Job had twice as many kids afterwards. He did get everything else back double, however.
Yeah...Job isn't my favorite book either, though I do admire Job's attitude in the end.

Re: Paralyzed accident victim fights for right to
 

You're right and I understand. And 99% of the time, I ignore his manure. But in the discussion of the physically disabled and challenged, it get touchy....I admit it. I spent the entire time reading the original post by Twisp with tears running down my face. And then to read his garbage?.....this is a hallowed subject and no place for someone wanting to start controversy.

Re: Paralyzed accident victim fights for right to
 

I'm sorry, you're correct. I typed twice as much goods in my mind and actually applied that to kids. Thank you for pointing that out.:)

Re: Paralyzed accident victim fights for right to
 

He didn't have twice as many living kids but the number of his children doubled. Half were alive with him and half were in heaven.

Re: Paralyzed accident victim fights for right to
 

My wife would say, "We treat Fido better than we treat Grandma."
She firmly believes that in conditions where there is no possibility of a medical cure a person who wishes to terminate his/her life should be honored.

I don't know if I feel that strongly about it or not. I have an incurable lung condition (incurable by human and medical standards). The only cure would be a lung transplant but I am in my seventies and, in my opinion, it would be morally wrong for me to receive new lungs when there are others younger than I who need them. I am mobile. I am not on oxygen. I get winded very easily and cannot walk far or exert myself so my condition is not intolerable. And, as I have told my pulmonologist, we are praying and I expect the dead areas of my lungs to be regenerated.

Both my wife and I have living wills and we both have given full power of attorney to each other.

Re: Paralyzed accident victim fights for right to
 

I wonder does it have something to do with Jesus' sacrifice for us? Hebrews 12:4 says, "Ye have not yet resisted unto blood, striving against sin." Job never went to the extent that Jesus did. Is that one of the points?

I'm reading a story about a missionary in China who had been persecuted and tortured - needles under his fingernails and electrical shocks from a baton. But, God strengthens him and he said that the ultimate peace he had was when he had surrendered body, mind and soul to the service and care of God. When you can be tortured knowing that God is going to take care of you or take you home, that has to be perfect peace.

Re: Paralyzed accident victim fights for right to
 

Right so unhook the machines and pray, "Thy will be done."

It is one thing to administer a life ending drug to someone because they are in a painful situation it is another thing altogether to force someone to live by hooking them up to a machine.

I say let him unhook the machines if he wants to.

Re: Paralyzed accident victim fights for right to
 

A positive note on a post that sounds so gloomy. Yesterday my pulmonologist (not sure how to spell that) told me that my lungs are operating at 70 percent capacity compared to 50 percent capacity in January of this year. God is good.

Re: Paralyzed accident victim fights for right to
 

And that's a great point! Are we circumventing God's will by hooking a person up to 4 million dollars worth of machines? I understand this argument could be applied to all medical treatment, but still.....it's interesting.

Re: Paralyzed accident victim fights for right to
 

Outstanding for you!

Re: Paralyzed accident victim fights for right to
 

And I have no problem with someone that doesn't want to take medication as long as they are competent to reject it. I don't want a parent refusing life saving drugs for a minor.

Re: Paralyzed accident victim fights for right to
 

Praise the Lord!!

Re: Paralyzed accident victim fights for right to
 

That's awesome, Sam.

Re: Paralyzed accident victim fights for right to
 

...as a former bible school classmate, who's dorm room was next to mine, did and is now serving serious prison time.

Re: Paralyzed accident victim fights for right to
 

I don't know your classmate
but
it sounds like he/she did what he/she thought was the right thing to do.
It would be harder for me as a parent to with hold medical help from my child that it would for me to with hold medical help from myself.

However-- If I want to "trust the Lord" and refuse medical help for myself it is one thing but for me to "trust the Lord" for my child it is some thing else. I think it is good for the civil authorities to intervene in cases like this, but, I'm kinda fearful of where that "slippery slope" may lead to with the state taking over the "rights" of the parents, especially when "religion" is involved.

Here in Ohio, we know of churches (both UPC and ALJC) which do not believe in doctors and medicine.

Re: Paralyzed accident victim fights for right to
 

My dad and I have had discussions about how far to carry the right to live/die. I watched a close family member get injured and give up on life, yet still continue to be held to living. He wasn't going to get better, was in serious pain, and the doctors knew it was only a matter of time. I don't want that. Not for myself or anyone I know. Dad is scared of my opinion, though. He saw the same thing, but he wants to keep living for as long as possible, just in case. I understand his wishes and would do what he wanted for him if he were in that situation.

I feel for this young man. I wonder if he'd had the choice of living or dying at three, what he would have chosen? Is he glad of any of the years he had? If he had some viable option of a career, would he take it, and want to live?

Re: Paralyzed accident victim fights for right to
 

Dale? That situation involved refusing to take their child to the hospital and only calling 911 after she was either dead, or almost so.

Re: Paralyzed accident victim fights for right to
 

Yes, Dale. But the 911 call came from a relative in California who found out what was going on.