DYING WITH DIGNITY - The Explorer: Import

DYING WITH DIGNITY

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Posted: Wednesday, July 17, 2002 11:00 pm | Updated: 7:46 am, Thu Mar 24, 2011.

Lynette Jaramillo is in the business of helping the terminally ill die with dignity in a house of love and light. She and her staff of 78 at Casa de la Luz Hospice, 400 W. Magee Road, also help the survivors go on with their lives.

Experience has taught her how difficult that can be.

"I went through all kinds of counseling and no one normalized the grief I was going through," Jaramillo, an only child, said of the months following the death of her mother in 1971 at the age of 49. Her father had died nine years earlier at 57.

"No one said 'Well, you've just lost the most important person in your life, it's no wonder you feel the way you do.' Counselors would tell you you're working too hard, you're a mother with three children, maybe you're married to the wrong person - all the things delved into when you get one on one counseling."

What Jaramillo, co-owner of Casa de la Luz Hospice simply needed to hear, she said, was that her feelings of grief and sense of a support system lost were normal.

Instead, intensive counseling left her so traumatized that she spent three months in a hospital before walking out rather than accept a diagnosis that she was mentally ill. It would take 10 years before she would be able to say her mother's name.

On average, Casa de la Luz serves about 120 people at a time, said Jaramillo, the hospice's executive director. The staff of 78 includes her partner, Agnes Poore, a registered nurse, two doctors, 22 nurses and visitation professionals such as chaplains and counselors.

Most of the hospice's clients will be dead within 42 days of the time they are first seen.

Some will die within hours, often because doctors refuse to stop treatment and don't refer their patients to hospice care on time, Jaramillo said. Others will die on their way to a skilled nursing facility, assisted living complex or Casa de la Luz's residential hospice called Kanmar Place, 770 W. Kanmar Place, a 4,000 square-foot facility and Tucson's first residential hospice home.

The longest stay has been 13 months.

To be eligible for hospice care, a patient must need the services of a skilled health professional and receive certification from two doctors that the patient's life expectancy is six months or less. That doesn't mean that a patient is no longer eligible if he lives beyond the six months, Jaramillo stressed.

Hospice care is the only health care category in which the bills are paid by Medicare when a patient is a member of a health maintenance organization.

"I hope it stays that way," Jaramillo said, "because we have no HMOs telling us what to do. They can't limit care because Medicare has the only say."

In cases where a patient may be dying of lung cancer, as an example, but is also being treated for diabetes, Medicare pays for the terminal illness care and the HMO pays for the diabetes treatment, she said.

But Medicare also requires all hospices to provide free support services for a year to the family of the person that died, she said. For some providers that could mean anything from a referral to the nearest church, a letter of condolence or being sent to other support services.

"At Casa de la Luz, though, we have a very evolved support program because I remember what I went through," Jaramillo said. "I know what that grief is like."

Most people think of hospice as merely a place to go and die without having to have loved ones see the agony you may be going through, she said.

"People see it on TV all the time, the person dying in agony and unsupported. Well, in hospice you don't have to die in agony and you do die supported. Your family is there, we're there. We're not there 24 hours a day, but if you start to decline and you're actively dying, yes, we are there.

"If a patient or family member calls and says 'I'm scared, I need somebody,' 24 hours a day seven days a week we go there," she said.

Most people want to die at home unless they feel they can't be supported there, she said. A person dying of emphysema and gasping for air may feel they have to be in a hospital to get the support they need, as an example, or another might not want loved ones to see their pain.

"But to have people die in a hospital room with all kinds of bells and whistles while being turned every two hours, poked and prodded and having every kind of machine around you, that's no way to die," Jaramillo said. "You want to be surrounded by your children and your loved ones. In hospice, we will be there as much as a person needs us to be. When supported by our chaplains and counselors, our patients come to realize there's not the stigma to dying they feared."

Jaramillo attended the University of Arizona and Pima Community College, but never received a degree. As a child she was a ticket taker in a number of small theaters her father owned in various Arizona mining towns.

After working in a bank for six years, Jaramillo left in 1978 to work for an engineering and architectural consulting firm. in 1987 she took a job with Cottonwood Properties as it struggled in the aftermath of the savings and loan disasters and cleanup efforts by the Resolution Trust Corp.

While attending a Tucson leadership training conference in 1990, Jaramillo caught the eye of national recruiters and found herself being named Southwest area director for Interim Health Care, a national health services firm.

Jaramillo got a chance to write her own health care business programs and build a company pretty much from scratch when she left Interim Health in 1995 and started Professional Nursing Services for an investor, turning it into one of the largest stand alone health services agencies in Tucson.

The business was sold in 1998 and Jaramillo was forced to sign a one year, non compete, gag order contract that prevented her from telling her workers any of the conditions of the sale.

"One day I had to stand up before workers and say what a wonderful company this was," Jaramillo said. "Afterward, I just hated myself for it."

So she went home, flipped on the TV and on the screen was talk show hostess Oprah Winfrey and a guest talking about the guest's book, "In My Wildest Dreams." It took Jaramillo three weeks to get the book, but when she did, she read it from cover, completing all the assigned exercises in the process.

"Out of the exercises in that book came Casa de la Luz, not the name, but the concept," she said.

Her "wildest dream" was to put together a company that no one would be able to sell from underneath her, a company people would love to work for.

In the meantime, the father of Jaramillo's husband of 40 years was dying.

As executive director of Professional Nursing Services she could handpick the home health services people to care for him, but even they couldn't provide the kind of help and counseling available through hospice, she said.

But because of Jaramillo's reading about hospice as a commitment to one's right to self closure, somewhat of an hospice type approach was adopted in dealing with her father-in-law's dying.

"We set up his house like a hospice room with his bed in the middle of the living room and surrounded him with love and light and talked to him about dying and his belief system, not ours," she said.

It was from that house of light that Casa de la Luz got its name.

The father-in-law died in 1998 at the age of 87.

What the family was unable to provide were the people who could bring everyone together to talk about legal issues, financial issues and spiritual issues, she said.

To start Casa de la Luz, Jaramillo and Poore each mortgaged their homes, sold their life insurance and ran up a $100,000 credit card bill. By the time they received their first Medicare payment in June 1998 they had already invested more than a quarter of a million dollars in the business. Four years later, they're proud to say, they're practically debt free.

"We've come to nearly the absolute penny of what we forecast in our business plan and that's a result of all the research that went into the creation of the business," Jaramillo said.

"I made a lot more money working for a big, nationally traded company than I'm making now as a privately owned company" she said. " With many of the nationally traded companies "it's all about making someone else's stock or bank account look really good. It isn't about the care I promise you, and the care that I'm promising to give to your loved ones," Jaramillo said.

"I used to say to doctors after my mother died I don't know how I'm going to be able to get up in the morning and keep on going," she said. "That's why you'll find that our bereavement program is the finest in the city. Because I want, whenever someone else's mother or wife dies, for us to be there for them. And that's why every day we get a stack of mail from families thanking Casa de la Luz for the difference it has made in their lives."

A Casa de la Luz Foundation also has been established to provide hospice care to those who can't afford it. The foundation has raised more than $80,000 to date, largely with contributions of $25 or less, and is currently financing the stay of one of five patients at Kanmar Place, Casa de la Luz's in-house hospice. Donations are made through wills, charitable gift annuities, trusts, life insurance, retirement plans and fund-raising efforts. Additional information can be obtained through the foundation's Web site at www.casafoundation.com.

Casa de la Luz is looking to expand on its services when construction begins in the next 45 days on a 12-bed, inpatient hospice unit near Northwest Hospital. The estimated 10,000 square foot building is expected to be finished in about nine months and will have a staff of from 20 to 25 health care professionals.

"In this business we're begging for people to come and work," Jaramillo said. "There aren't enough nurses, there aren't enough counselors, there aren't enough caregivers. You can pay top dollar and provide all the benefits, but they'll just go down the road and get that. So there has to be something else to keep them.

"That's the business we've tried to create, one with people who care as much as we do."

© 2014 The Explorer. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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