ARTICLES

The Middle Ground

"I Hope I Never Need You"

By Robert Kumpel

"Terminally ill people are still alive." So says Dyanna Penner, president of Horizon Hospice, which provides care for the dying.

Bruce Ackerman, Penner's father, is the CEO of Horizon Hospice. He explains how they got into the business. "My dad had multiple myeloma, a form of bone cancer, for five years and was considered terminal for most of them. Dyana's grandmother had two different types of cancer for three years before she passed away.

"We took our own life experience and applied it to the way we run this hospice. We don't have voice mail, because we know the last thing a patient or a family member wants to talk to is a recording. They always talk to a live human being, even at three in the morning. We don't do phone tree here. Usually, the first person who anwers the phone can anwer your question and, if not, at the very most, it takes another person to anwer the question. We don't rotate our nurses, which a lot of hospices do. We assign one nurse to the patient and family through the duration, because we believe there's a continuity of care there. Many hospices in San Diego -- and there are 12 in the county -- make their nurses visit 10 to 15 patients in a day. Our nurses average three to four visits in a day. That's based on our instruction to them that they go and stay as long as they need to. If that's forty minutes, that's fine, if it's four hours, we really don't care. Frequently the nurse will go in and do 20 minutes to a half hour of patient care and then start to leave and a family member will follow her out to the driveway and and do what we call a "driveway" and spend two hours with them downloading their emotions."

Most hospice clients live either at home or in residential care facilities. Ackerman estimates there are about 530 of these facilities in San Diego County. "We provide care wherever people call home and many people who require hospice care end up in these residential facilities. Typically it's someone's home where they're caring for four to six people. The next level of care would be a skilled nursing facility. The only place hospice is not allowed by Medicare regulations -- which we follow and they're pretty extensive -- is in a hospital."

Another area of patient life the hospice helps manage is the family. Terminal illness usually increases stress and sometimes facilitates reconciliations between estranged family members. Ackerman recalls one patient who had been living alone, estranged from his family for years. "His family didn't even know he was ill. He told one of our staff members that he wanted to see his family. Fortunately, they lived in Los Angeles and were able to come back down. They spent several hours with him, saying 'I forgive you.' 'I love you' -- it was fantastic. They left, and a half hour later he died."

The largest and best known local hospice service is San Diego Hospice in Hillcrest. While Ackerman acknowledges them as a fine organization, he says that Horizon Hospice is different -- especially in the number of clients they serve. "They have a census that probably runs in the hundreds. We have a limit on our census.

"We had a fellow whose dying wish was to play a particular slot machine in Las Vegas. Ten years prior, he had been playing that machine at the Four Queens and hit the megajackpot, but he'd only put in one dollar, instead of three. So he felt, rightly or wrongly, from then on, that that machine owed him, well before he became ill. He wanted to go back, but wasn't able to go back. When our visiting social worker found out about this, we called the Four Queens and they very graciously comped him a suite of rooms and a gambling credit. Reno Air gave him a first class ticket and we arranged for a stretch limousine to pick him up -- he lived at St. Stephen's -- a retirement community down on Imperial. Channel 10 came in and covered it as a feel-good story. When he got up to altitude, the captain came on and announced that they had a very special passenger on board, because Jake (that was his name) had been General Patton's driver during the Battle of the Bulge in World War II. As we deal with these families, we look at them as living history.... One patient was a survivor of the San Francisco earthquake when she was six years old. She shared with me how she clearly remembered it, how her house partially fell down and was later burned.

"We actually took care of one person in his ex-wife's garage and that was his choice. She made a spare bedroom available, but he wanted to be in the garage so he could sit in an easy chair with the garage door open, looking out on life from the cul-de-sac where she lived. We put in a hospital bed, put in oxygen and made it like a hospital and he lasted several months, sitting and watching from his chair."

Situated in a plain building in a back lot off Poway Road, every room at Horizon has toys on the floor and evidence of children. There is a playroom for children and small children sharing office space with their parents, including Alex, Penner's daughter. Penner worked at the hospice growing up and took her position after graduating from Cal State Fullerton.

While Ackerman and Penner seem easygoing, one thing that upsets them both is euthanasia. Penner explains, "We have been faced with people who have wished to commit suicide, and when you're dealing with this population, there will be people who think that's what they want. But when you deal with their symptoms and the depression that sometimes accompanies the diseases that they are facing, they no longer want it."

Ackerman: "It's not either be racked with pain or do it Kevorkian's way. There's a huge middle ground at hospice, where they can be dealt with in a compassionate, dignified manner. I would point out that a study by a coroner in Kevorkian's area showed that five of his people weren't ill at all. Sixteen or so weren't terminally ill.

Penner says that making a patient more comfortable can mean different things. "You get them over the side-effects of chemotherapy so they can have some quality time. Many times we cut back on the medications they're taking. Some people will be taking 25 to 30 different medications and we try to get it down to six or seven medications, The confusion lessens and the quality of life goes up. Many of these people are seeing two, three, sometimes four different doctors and the doctors don't all know that they're involved. We coordinate that. We work with their physicians to eliminate medications for long-term problems. People on salt-free diets who are terminally ill complain that they can't enjoy food anymore, we'll talk to the doctor, and he'll usually say, 'let 'em have all the salt they want!'"

Ackerman: "A common misconception with patients and family members is a fear of getting addicted to pain medication. My own father was very much afraid of becoming addicted. There are numerous studies, and we can tell you from eighteen years' experience, people do not become addicted when they have this kind of pain. And, assuming the worst, if they did become addicted, they're terminally ill. What difference does it make?"

Many people think Horizon Hospice is a part of Horizon Fellowship, but they are not affiliated with any church. Everyone, however, who works at Horizon is religious. "We get far more out of what we do than what we put in," Ackerman says. "The chance to help people at the second most important time in their life is a privilege and we look at it as a privilege. Probably fifty percent of our staff is Catholic."

Hospice care is available to anyone terminally ill, regardless of income. Penner explains, "Medicare pays for hospice100 percent. None of the HMOs are signed up to provide hospice, but straight Medicare continues to provide for hospice while the HMOs provide their coverage for the other things. The hospice, much like an HMO, becomes 100 percent responsible for anything related to one primary, terminal diagnoses. For instance, a patient may have diabetes and end-stage emphysema. We could provide for the end-stage emphysema and the HMO would continue to provide care for diabetes."

If hospice provides so much comfort to dying patients and their families, why do so few people take advantage of it? Penner believes it's because hospice is still a new concept. "It started in England in 1968 with the founding of St. Christopher's Hospice. It started in the U.S. in 1974 with the opening of the hospice in New Haven, Connecticut. It didn't come to the West Coast until 1976. It didn't become part of the Medicare benefit package until '84, which is when we opened. There have not been that many hospices open and available to people. There are still rural areas that are not covered by hospices."

Ackerman: "Most people don't want to think about it. At street fairs, people will say to me, 'I hope I never need you.'

The key that unlocks hospice is a physician's certifying that a patient has six months or less to live given the normal course of the disease. "If the patient lives beyond six months, we don't shoot the doctor or get rid of the patient. As long as they continue to be terminally ill, we continue to care for them. Occasionally, we have people who get better and we're happy to 'kick them off' of hospice. We joke that we're 'The Lazarus Hospice' at that point. We have people who get better and stay better. Others get better for while and start going downhill again and we start caring for them again."

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