Sister's love keeps severely ill man alive
Now her persistence may get him out of hospital

By DAN GERINGER

DAVID WILSON has been living in Roxborough Memorial Hospital for
seven months. He is autistic and mentally retarded. He is 51 years
old with the mind of a young child.

Wilson cannot hold a conversation. He repeats what is said to him.
Often, he rocks back and forth, attuned to his own world.

He has end-stage renal disease (kidney failure), so he needs several
hours of dialysis three times a week to stay alive.

Before he took up residence at the hospital, Wilson was living in a
supervised group home but suddenly started resisting outpatient
dialysis.

During the three-hour sessions, he would try to pull out the tubes
connecting the dialysis machine to his arm. If a nurse intervened,
he physically resisted.

That behavior landed him in Roxborough Memorial last February and
continues to keep him there, although late last week his family
received its first ray of hope that his days there may finally be
coming to an end.

Wilson submits to dialysis at the hospital while under sedation and
restraints - which most outpatient dialysis services won't use due
to liability concerns.

His hospital room is his world. The small, slightly built, balding
man with the childlike smile and the craving for ice cream has a
couple of stuffed animals, a Spider-Man coloring book, a radio and a
TV.

The acute-care hospital that he calls home is not equipped to
address his autism or his quality of life.

Wilson is trapped between his dependence on dialysis and his
intolerance of it. He does not understand the trap. But it is as
real as life and death.

Wilson's sister Patricia Howell loves him. Her love is the single
most powerful force in his life and - although he does not realize
it - the thing that has kept him alive.

Howell, 62, is a petite, soft-spoken woman with the warm, reassuring
manner of the nursing assistant she was for 10 years at the Hospital
of the University of Pennsylvania before she got her current
personnel job with the Navy.

She does not present herself as a warrior.

But as the medical decision-makers in her brother's life discovered
this year, she is one.

"Some of David's doctors were encouraging me to have him go to
hospice care," said Howell, who is her brother's legal guardian.

"They appeared to be very sympathetic, but they felt that David was
telling them that he no longer wanted the dialysis, so he should be
removed from it.

"I don't know how they would know that. Most of the time he repeats
what you say to him. If you tell him, 'I love you,' he'll say, 'I
love you' back."

Howell said that when her brother's doctors asked her to consider
giving them permission to end his dialysis, "I was devastated. I
know my brother's not going to live forever and probably not to be
an old man. But I know that right now, he's not ready for that. And
I'm not willing to just let him go. I wouldn't sign the papers to
put him into hospice care."

"I thought about the fact that there was nothing else wrong with his
health except for the renal failure," she said. "And I couldn't
understand why you would suddenly bring hospice into the situation.
I was pretty shaken up but I thought, 'This is not going to happen.
Not like this.' "

Encouraged by her pastor, Rev. Myron Barnes of Bethany Missionary
Baptist Church on Warrington Avenue near 58th Street, and by her
daughter, Diane Martin, who flew in from Arizona to help, Howell
contacted an attorney, Keelin Barry, who specializes in family and
elder care.

Together, they challenged the idea that the mental-health system
could do nothing more for Wilson.

"When something is wrong, I'm willing to fight," Howell said. "Some
of the doctors looked at me like I was crazy. Others seemed pretty
upset about it. But I was determined that if there was any way I
could keep my brother alive, I was going to do it."

Working 80 hours on the case, Barry contacted everyone from House
Speaker Dennis O'Brien, who recently earmarked millions in the state
budget for autistic people's needs, to state Welfare Secretary
Estelle Richman.

And Barry filed an appeal with that department, citing the failure
of the Philadelphia Office of Mental Retardation Services to meet
Wilson's needs.

Meanwhile, Wilson, the center of Howell's against-all- odds effort to
save his life, remained unaware of the world outside his hospital
room.

"There were 10 of us children, growing up in North Philly," Howell
said, returning her kid brother's smile during a recent afternoon
visit, "and for awhile David was interactive with us, just like
other kids.

"When he was about 4, we noticed that he liked television a lot,"
she said. "He knew all the commercials. He started to be able to
read. At first, we thought he probably saw that on TV. But anything
you gave him from a newspaper to an encyclopedia, he could read. We
started accusing each other of secretly teaching him to read. But
nobody had.

"And he could count. We gave him numbers to add or subtract and he
could come up with the answers. This was all before he went to
school."

In elementary school, Wilson began exhibiting autistic behavior. "He
started rocking back and forth, sticking his fingers in his ears,
repeating things over and over," Howell said.

He was evaluated, diagnosed and sent to a specialized school, where
he was happy until he turned 17, she said.

"Something happened," Howell said. "David started to have problems
with his toileting, and other problems, too. People mentioned
putting him in an institution. My mother got very afraid for him,
very protective of him. She stopped taking him to doctors. She felt
threatened by the fact they had mentioned an institution. "

So her brother lived with his mother, Janet Wilson, for years, and
the years became decades.

"David became reclusive," Howell said. "We felt he needed to be
around other people like himself. We wanted her to contact agencies.
But she felt threatened. So he stayed with her. For years, she
didn't take him to see a doctor, especially as she got older. She
didn't want anybody to take him away from her.

"We would see David when we went to my mother's house and at family
gatherings. As my mother's health started to fail, David became more
and more reclusive."

After his mother was too sick to care for him and went to a nursing
home, David was sent to a group home in Roxborough. His kidneys
failed in 2002 and he required dialysis three times a week.

At first, he didn't resist it. But by late 2005, Howell said, after
David's longtime roommate died and was replaced by a new one who
provoked physical fights, her brother's behavior changed drastically.

David began aggressively resisting dialysis.

"My brother was beaten up by his roommate several times," Howell
said. "Both his eyes were blackened and his face was swollen. David
started punching and kicking during the altercations with his
roommate. During dialysis, my brother would pull the tubes out and
when they tried to stop him, he got out of control.

"Once, I told him, 'You know the nurses in dialysis are there to
help you. Why are you acting out?' David said, 'He hit me in my
face.' Months later, he still could not get over the fact that his
roommate had hit him in his face. He just could not let go of it."

By last February, Wilson, who had been forced to leave the group
home because of his behavior, was living at Roxborough Memorial
Hospital and receiving dialysis there while under sedation and under
physical restraint - two measures that his former outpatient
dialysis service refused to do because of liability issues.

He has lived in the hospital ever since.

"He's a sweetheart," said one of the nurses who care for him. "He is
just a dear soul."

"I think my brother kind of got stuck in a time warp," Howell
said. "He likes to listen to oldies from the '60s and '70s. When we
were kids, we would get up and act like we were some kind of singing
group. I think he remembers all of that because it was a good time
in his life.

"Whenever he's around family, he's smiling."

As if to prove her point, Wilson looked up from his dinner tray and
smiled at his sister. She reached out and touched his cheek. His
smile broadened.

"One day when I went up to visit him, he had the radio on," Howell
said. "I started singing and dancing. He laughed. He seemed like his
old self. Another day, the nurses heard music coming from his room.
He was sitting in his chair, bobbing his head back and forth,
grinning.

"At holiday time, I try to get as many family people as I can
together and you can see that he enjoys that. He is smiling all the
time. My husband, David, comes up here with me on Sundays to shave
him and give him a haircut. When we leave, David always says thank
you, and smiles."

But a hospital is not a home - even a hospital where the nurses tell
Howell how much they love her brother and recently demonstrated it
by throwing him a night-shift 51st-birthday party after she had
brought the family in for an earlier party that afternoon.

And as the months dragged on, and no word of progress came from
Philadelphia Mental Retardation Services, which has supervised
Wilson's case from the beginning, Howell became increasingly
frustrated.

"It's rough," she said, gently combing her brother's hair, while he
closed his eyes in pleasure. "And I'm just worn."

Finally, late last week, there was a breakthrough - and an
explanation for why it took seven months.

"We couldn't move him out of the hospital to a residential service
if we couldn't get him dialysis because that would be life-
threatening, " said Helga Krauss, manager for residential and day
support at Philadelphia Mental Retardation Services, where she has
worked for 23 years.

"We have people with retardation who get dialysis," she said. "None
of them fight the dialysis. This is the first time I've run into
this.

"We contacted 37 outpatient dialysis providers" and all 37 said no,
Krauss said. "He requires restraint because he resists dialysis. All
37 providers said they were not permitted to do restraint" because
of possible legal issues.

"If he pulls out the tubes during dialysis, he will die very quickly
because he's on a pump that's pushing his blood," she said. "That
may be why policies at most outpatient dialysis places prohibit
restraints. So we were basically at a standstill with trying to get
him out of the hospital."

Krauss turned to the state Office of Medical Assistance Programs,
which found a residential provider, The Association for Independent
Growth (TAIG), which in turn identified "the one dialysis provider
in this area willing to meet David's needs using the restraints and
the medications, " Krauss said.

"This provider has had some experience meeting the needs of mentally
retarded patients who have some combative behaviors during dialysis.
We were all enormously relieved."

Howell is spending this week finding her brother a TAIG apartment,
where he will receive 24-hour care, and is beginning to get him used
to the idea of leaving his hospital home of seven months.

She has won the battle for her brother's life, and the victory
floods her with relief and gratitude.

"I have this strong belief that if something is wrong and you stand
up and you hold your ground, God will see you through it," Howell
said. "And God has."