Finanical resourses including having insurance, are not a factor in eligibility for Hospice of Northern Virginia care, contrary to an indication in an article in yesterday's editions of the Style section.
When Jane Zorza died of cancer in 1977 at the age of 25 -- a cruel age to die -- she left her parents with a moral imperative.
When Victor and Rosemary Zorza, in the early burst of grief over her death -- and yes, gratitude for the way it happened -- wrote a long newspaper article movingly, sometimes pathetically, often inspiring, describing the serenity of her last weeks in an English hospice, they thought they had fulfilled their daughter's last wish to spead the hospice movement.
They found they had not even begun.
The reponse to their story was an outpouring of public anguish, grief, guilt, personal experiences along with sympathy and compassion, even, sometimes, bitterness. It led them, almost drove them to expand to lend some strength to a small struggling hospice movement here.
Now, they thought, their promise to Jane was fulfilled.
Again, as it turned out, not yet. Indeed, it seems that as the Zorzas become ever more deeply involved in trying to provide the means for others to share their own hospice experience, they may never feel they have done enough. They have become willing hostages to the hospice ideal, submerging their own careers and interests to the demands of a new way of death.
Zorza, a specialist in Soviet affairs and for years a syndicated columnist, went through a period of frail health himself. Only a matter of days after the manuscript was completed he underwent heart surgery in England where the Zorzass spend about half their time. He is fully recovered. Rosemary Zorza is a ceramist and has authored a book on pottery. Victor Zorza was born a Polish Jew. Rosemary Zorza is English. They have a grown son.
For the Zorzas, the book and the hospice movement are memorials to Jane, a focus for energies and emotions unleashed by the experience of Jane's dying -- or "the dying of Jane," as Victor Zorza puts it.
They approach the movement with the spiritual zeal of the born-again Christian, an irony because they are religious skeptics. But only a small irony, because now they have become spiritual believers in this way: They have shed the fear of death. Or at least confronted it. They are serene people.
The hospice movement as it is developing in this country is a far cry from that which the Zorzas and their daughter experienced in England.
There, once medical science has done what it can, the patient and his or her family become the focus of a team of medical, psychological and social personnel skilled in their fields, attuned to the problems. There is every effort made to keep the patient living as normal as life as possible for as long as possible -- without, however, efforts specifically aimed at prolonging life. When the patient needs it, there is a bed in the hospice with round-the-clock care, if only to alleviate pain -- or even just provide company. The fear of dying alone, says the Zorzas, sometimes outweighs the fear of death itself. "She said she didn't want to be alone," Zorza recalls, and in the hospice Jane was told she never need be alone.
Every effort is made not only to ease stress, says Victor Zorza, but to create an ambiance . . . he struggles for words . . . "not just where there is no stress," he says, "because, you see, it is very difficult to convey the positive. It is so much more easy to convey the agonies, stresses and difficulties we suffered, it was . . . "
"It was," puts Rosemary Zorza, who has a habit of completing her husband's sentences when he seems to falter, "it was an atmosphere of positive anti-stress."
Dr. Josephine Magno is director of the hospice program of Georgetown University Medical Center's Lombardi Cancer Center. She is the former medical director of the Northern Virginia hospice and is now executive director of the National Hospice Organization, a group to which the Zorzas are dedicated and on whose council they serve as co-chairmen.
She is dedicated to the hospice philosophy, but she concedes, sadly, that the kind of hospice the Zorzas found in England "is not possible in our health care system . . . It doesn't fit our system at present. I would like to see the day when we can take anyone into any hospice care program . . . "
Dr. Magno is reflecting on the apparent ineligibility for hospice care of Joe Kreuter, the 18-year-old cancer victim who was ejected from NIH because he smoked marijuana in the wards, who has lived a painful and fear-wracked street-life in suburban Virginia, sometimes using his entire allotment of pain-killing drugs at one time because he feared that otherwise they'd be stolen as he slept.
To be eligible for the Northern Virginia hospice his doctors must affirm he has less than six months to live.
Nor is he eligible without insurance.
Yes, agrees Dr. Magno, "it does seem to violate what loving care is all about . . . My own private dream is that maybe in 20 years . . ."
In England Kreuter and his family would be enveloped in a cocoon of psycho-social support and comfort as a matter of the country's national-health-service routine. But at present, in this country, for the most part, hospice beds are available only to the terminally ill at the brink of death, to those who sentence has already been made known to them and whose premiums are paid up. More prevalent is the so-called "hospice without walls," in which the patient remains at home and the hospice support is brought to him. It is worthy and worthwhile. It is not the same, however.
Part of the problem, feel the Zorzas, is the American denial of death. "People always feel they've got to do things well," says Rosemary Zorza. "People feel you've got to be a success in our society. You've got to cope with stress well and you've got to cope with illness well and it's all bound up with denying death. In a sense, denying pain."
In America the dying are neatly tucked away out of sight.
In England, they and their families, says Victor Zorza, are told that "we'll clear you pain to the extent possible, but we'll restore you psychologically to the kind of mental state where you're living again, instead of dying . . . It gives them the capability to enjoy all those things which a person cannot do if he or she is stretched out in a bed thinking only of the pain and when I'm going to die."
The Zorza efforts on behalf of "hospice," as they call their cause, have not always been successful. A Polish refugee who escaped the World War II Holocaust, Zorza masqueraded as a non-Jew, even long after the way, denying his Jewish forebears, even as he denied death. Although, over the years, the story was told to his family in bits and pieces, it was not until the family hospice experience that it was fully told. However, his word led him to associate with many Iron Curtain emigres and refugees and his affinity for music led him to warm friendships with Mstislav Rostropovich, Vladimir Ashkenazy and others. For a year he labored to set up a benefit concert, to find a date when Rostropovich and Ashkenzay, along with Andre Previn and Yehudi Menuhin, were free.
The concert was set, finally, for Feb. 9, 1981, in Washington. A committee was formed. It would be broadcast by public television. There would be a hospice benefits throughout the country, he hoped.
But Rostropovich is scheduled to conduct regular concerts of the National Symphony in February and Menuhin will make four appearances with the National Symphony in February and the symphony's own benefit gala is scheduled in February and finally, because the symphony itself is on tremendous financial ground, Martin Feinstein, NSO president, who has a contractual veto, said no go, on the grounds that appearances by Rostropovich and Menuhin so close to their NSO performancess would adversely affect the symphony's ticket sales.
"We have requests from other organizations, too, we'd like to help," Feinstein said last week. "But when it conflicts with the best interest of the symphony which is very precarious, there are limitations to what we can do. tBelieve me, it was not a capricious decision. I said we'd help in every way possible."
"If there was one thing we'd like to persuade people," Victor Zorza says, "is to tell them, to show them how wrong we now know we were for not telling Jane earlier [that she was dying] and not being more open. Because that destroys the trust in the family. If you're hiding something there can be no trust. And of course Jane knew where she was and she knew she had cancer and she she knew was weaker every day . . . "
Here is how Zorza describes the way a patient in a hospice is told:
"Some people don't want the knowledge and must not have it forced upon them, might not be able to stand it. But those in the hospice know how to bring it out, little by little, talk to the patient and at last the patient will say to the nurse, after they've discussed symtoms for days or weeks, 'Do you think it sounds like I'm dying, nurse?' And even then the nurse will not say, 'Yes, yes you are' because that's what she's been waiting for. Instead she will say to the patient, 'Well, what do you think?' and the patient will say, 'Well, I don't really know,' and the nurse will say, 'Well, what do you know?' So they go back and forth and then the patient asks her again, 'do you think I am dying?' and the nurse will say, again, 'What do you think?' and at last the patient might say, 'Well, I think maybe I am.' And the nurse will still not say, 'Yes, you are,' she'll say, 'Well, why do you think so?' . . . So the patient really tells himself."
The Zorzas cried a lot when they were writing the book, "A Way to Die," but, says Rosemary Zorza, "it was strange. It was usually when we thought of the happy times."