Southwest Medical Associates Hospice forged its mission during the AIDS crisis. The crisis is over, but the mission lives on — with hospice house calls that bring comfort to the dying
Lying on a living room lounge chair, his body bent and broken, Gary Gould exists inside a physical and emotional cage. He’s awaiting the moment when the fluid pooling inside his lungs will finally drown him.
Worse, the once-doting father and grandfather of 13 has been denied the sensations he once took for granted. Like eating solid food, taking walks, hugging his wife, Sharon, telling her yet again how much he loves her.
At 74, Gould suffers from Lou Gehrig’s Disease, a microscopic invader that is silently savaging the nerve cells in his neck and spinal chord. The Henderson couple knows theirs is an irrevocable sentence; in hours, days or weeks, Gary’s body will finally relent, no matter how much his wife, children and grandkids implore him to keep fighting.
On a sunny December afternoon, Dr. Dean Tsai arrives to help him prepare for that end. The tall, angular physician with a stethoscope and spiky black hair is a veteran witness to the ravages of incurable disease. He knows what can, and what cannot, be done to intervene.
He finds Gould slouched beneath his Green Bay Packers team blanket, inside a room crowded by seasonal decorations: a Christmas tree, elf statuettes, and a red holiday stocking bearing the word “Grandpa.” There are also the accoutrements of a man waiting to die — an arsenal of breathing machines whose hum has become his constant soundtrack, not to mention the single bed, now discarded and moved against a wall, that he has lately been too exhausted to reach.
Tsai leans forward. “I can imagine how frustrating this is,” he says. “Let’s take a listen to your lungs and see how you sound.”
But Gould can’t answer because he cannot speak; the march of the disease has seen to that. His head tips involuntarily because his depleted neck muscles can no longer support the weight. He takes all his food through a stomach tube. His arms are weak; the once-strong hands are now gnarled and nearly useless. Even his legs, the healthiest part of his body, are mere spindles.
Through it all, Sharon Gould has stood by her husband as an ever-present guardian who can read his every need and gesture. Since the disease pounced in 2012, the bright-eyed man she met three decades ago at a church meeting for divorcees — the real estate agent, pizza franchise owner and finally, airport worker — can no longer hold her in bed at night, speaking in whispers, talking over bills and sharing memories.
But she knows her Gary is still very much there. He communicates by writing on a purple electronic pad, his once-elegant penmanship now a scrawl. “His mind is really good,” she says, adjusting the head band on his oxygen mask. “A lot of people look at him and assume that he doesn’t understand. He understands perfectly.”
As if on cue, her husband taps his head, as if to say, “I get it. I’m still here.” But his expression is one of overwhelming fatigue.
The good fight
Actually, Tsai is here to administer to both this dying man and the devoted woman by his side. He’s a 45-year-old Michigan native whose specialty is hospice and palliative medicine. The wisdom he has brought the couple for the last year isn’t about stronger pills or last-ditch tests, but coping mechanisms for the inevitable, and advice for both patient and family about preparing for the good death — at home, without pain.
Tsai is one of two full-time physicians at the Southwest Medical Associates Hospice, the second-longest operating hospice in Las Vegas. Its history was forged amid a long-ago war: the cultural controversy over the compassionate treatment of AIDS patients.
In 1989, the hospice then known as Family Home Hospice was founded by veteran nurse Bonnie Hillegass. It was the first hospice to offer home health care for patients dying of AIDS — deeply significant, when you remember this was a time when the disease was so rife with paralyzing stigma that many doctors and nurses refused to treat its victims. Instead, they turned their backs, fearful of what they considered a new Medieval plague.
Medical breakthroughs have since reduced the AIDS death toll. In 2014, HIV and AIDS patients represented only a fraction of the 1.6 million Americans who received home hospice care. At Southwest Medical Associates Hospice, the 700 patients treated each year include only a handful of HIV and AIDS sufferers. Still, the doctors, nurses and counselors administer to the effects of new, no-less-baffling diseases like Alzheimer’s, dementia and cancer. In the end, still they employ the lessons learned all those decades ago during the height of the AIDS epidemic.
“We learned that knowledge is a powerful force to combat fear,” says Hillegass, who helped lead the effort to treat AIDS patients. “We learned that patients are people, no matter what they are dying from. All those lessons have persevered.”
Hillegass retired in 2009, but physicians like Tsai carry on her work. On this December day, he witnesses firsthand the spectrum of patients who require hospice care. He sees Gould, whose body is failing but whose spirit remains strong with the support of his family. Later, he visits with 92-year-old Joseph R. Mercorella, a long-retired butcher from Brooklyn who suffers a fate perhaps worse than death: not being able to die.
Mercorella suffers from heart failure, and is doing so alone, inside a residential care facility off Flamingo Avenue, in a barren room with a small TV and pictures of his past life. His longtime wife Mary died years ago, and he wants to join her. His body just will not cooperate.
Every night, he talks to God. “I pray for him to let me die, so I can join Mary,” he says. “I don’t get any answers though.”
Tsai, a father of two, knows how to reassure both men. For years, he worked in primary care before finding his calling. One experience in particular helped change his medical focus: He was treating a patient at a Las Vegas hospital who was dying of end-stage cancer. One, day, the man asked to be taken off life-support so he could die on his own terms.
Tsai remembers unhooking the tubes and turning off the machines. Then he sat next to the patient and held his hand until he finally passed away. “It was momentous for me,” he says. “I knew I had to do more for these people, to help make death easier for them.”
‘Nobody wanted to take care of us’
Bonnie Hillegass remembers her own Gettysburg, the deciding battle in a ruinous national war.
The year was 1989 and the Family Hospice director needed nurses to visit the homes of local AIDS patients.
No one would go.
It was an era, she recalls, of both fear and loathing. Newspapers had labeled the epidemic “the gay plague” and the American public — the medical community included — blamed the patient for contracting the disease.
Hospitals often turned away AIDS patients and those who were accepted were treated like modern lepers. Doctors wore veritable moon suits to treat them. Many nurses refused to enter their rooms. Instead, they stood outside the door at a safe stance, and barked commands.
“Ever since the first AIDS deaths in 1982 or ’83, nobody wanted to take care of us,” says Dennis McBride, a Nevada historian and gay activist. “Even the hospitals would not make room for us.”
The medical facilities were not alone in their rush to judgment, recalls Rob Schlegel, another activist who once published gay and lesbian community newspaper the Las Vegas Bugle. Many counseling centers would not treat gay men; they didn’t want other patients to share waiting rooms with those with disfiguring tumors brought on by the AIDS-associated Kaposi sarcoma. And in perhaps the greatest insult of all, even many funeral homes turned away the wasted bodies of those who had lost the fight.
Hillegass had seen the light of compassion years before, when her local Catholic church sponsored an AIDS quilt to rally support for disease victims. If the church could turn the other cheek, she reasoned, so could she.
By then, Hillegass’s Family Home Hospice had been bought by Sierra Health Services, who kept her on to run the outreach. It was an effort she determined would include gay men suffering from AIDS. “They were people, they weren’t mere statistics,” she says. “We decided to take care of what needed to be taken care of.”
She reached out to an old colleague, Dr. Jerry Cade, who in 1985 had started an HIV in-patient treatment ward at University Medical Center. Back then, the facility was among only 25 of its kind nationwide and the first in the U.S. for a city with under 1 million residents.
Cade also knew that treating AIDS patients made him an outcast in the medical community: In some hospitals, doctors would walk across the room to avoid him and many surgeons stopped returning his calls, unwilling to operate on AIDS patients.
Hillegass shared his vision of compassionate care. And she wanted his help in providing AIDS patients in her system with the best care. Cade, now 61 and director of the viral specialty treatment service at UMC, which handles both AIDS and hepatitis cases, joined Hillegass and has never looked back.
He remained medical director at Family Home Hospice until 1996, when new drug treatment meant fewer and fewer AIDS patients. “Bonnie was there from almost the start,” he says. “She did what she had to do.”
Answering the call
Not everyone shared Hillegass’ vigor; not even her own employees. So that day in her office when she needed AIDS caregivers, she asked for volunteers. Those who replied included John Danks, a former priest at Hillegass’ parish who later chose to leave the order.
Her son Matthew stepped up as well. “Father John gave me the spiritual strength to help prepare them for their journey to the next life,” says Matthew Hillegass, who now runs a local health care company.
Sharon Carelli was another Family Home Hospice nurse who answered the call. In 1983, while working at a local hospital, she heard doctors condemning AIDS patients. “‘This is their
punishment,’” she recalls overhearing. “‘I’ll never take care of anyone like that.’”
She promised to learn all she could about the disease. Working for Family Home Hospice, Carelli counseled many young men who’d been abandoned by their families. And they thanked her for it. One called her “mom,” saying Carelli was the mother he’d never had. Another, a former waiter at the Flamingo, died at 33, after much of his family refused to acknowledge him. The man’s partner told Carelli she had helped affirm the identity of a dying man. “He said I’d helped him realize he was a good man, one who did not have to be ashamed,” she recalls.
New faces on the frontline
New diseases have now taken place of AIDS on the frontline of hospice care. The ongoing effort includes not only the work of physicians like Dean Tsai, but nurses, counselors and volunteers such as Natasha Parks. She recalls the afternoon she visited a dementia patient in a residential care facility. As she arrived, she ran into the woman’s husband and son walking out the door. Inside, the woman sat weeping in her wheelchair.
“Why do they have to do this again?” she cried. “To take him away from me?”
The woman’s fractured mind had turned her son into a military officer who was taking her husband away to war; a scene she’d witnessed earlier in life. Parks talked to her patient, distracting her from the obsession like changing the channel on a TV set.
Many hospice patients express their thanks in writing — like the elderly woman without family who suffers from Chronic Obstructive Pulmonary Disease. Recently, she described leaving the hospital to return home for hospice care. She weighed just 84 pounds.
“I never saw a body like mine, so ugly,” she wrote. “I looked like a freak, so weak, fighting for every breath, and I felt I was dying soon. At least I wasn’t in that hospital and could die at home with my cat Snoopy by my side.”
Hospice care, she insists, has meant all the difference. It’s a sentiment that could have been spoken by the many AIDS patients Family Home Hospice has treated before her, whose experiences helped lead to the care she receives today.
“I am no longer afraid to die,” she wrote. “I don’t want to die, but knowing I will not die alone is a blessing.”
‘Your wife is waiting for you’
Dr. Tsai sits on the single bed next to Joseph Mercorella. He rests his hand on the old man’s leg, listening to his litany of physical complaints. Dressed in grey sweats, white socks and a red-plaid short-sleeve shirt, Mercorella says his knees hurt so much he must use a walker to move. Now the pain has moved into his hands.
“I’m not used to this,” says the longtime butcher. “I’m used to a rugged life. Do you know the strength it takes to saw through animal bones?” He glances over at the photos of his wife Mary. She was a beautiful woman, he says. But now she’s gone.
Tsai leans in: “Your wife is waiting for you.”
“Good. Because I want to drop dead.”
“It sounds like you’re ready,” the doctor says.
“I’m thankful for living this long,” Mercorella says. “But not longer than Mary. I never wanted that.”
An hour earlier, Tsai was sitting inside the Gould’s Henderson home, a once-homey space turned hospital room. Sharon talks about their life together with their growing family — some of the children are his from a first marriage; others hers. She describes their vacations and the time Gary traveled to Green Bay, WI. and Lambeau Field, the home of his beloved Packers.
Suddenly, he bends to write on his electronic pad. “I don’t know why I came down with this disease,” he scrawls. “But I don’t have any choice but to accept what God is doing.”
The couple tries to keep their spirits high, to tease each other like the old days. When she goes out for errands or lunch with friends, Sharon texts Gary at home, asking “Are you OK?”
One day, he responded “I’m OK. A bunch of girls came over and we’re having a party.”
The time comes for Dr. Tsai to leave. Gary points to a video player. He wants the doctor to view the collection of family memories; images of him as a young man, playing with his kids, holding his grandchildren on his lap, laughing with his wife.
“He likes people to see that video,” Sharon explains, “so they can see who he really is.”
Tsai has seen the video before; he knows Gould is a shell of the man he once was. But he’s not gone, not just yet.
That keeps him coming back. Tsai walks to the door. “I’ll see you soon,” he says.
Gary flashes him a thumbs up.