The hospice movement is becoming controversial, and the article about the death of our daughter, Jane, in an English hospice, which appeared in The Post in January, has given a fillip to the debate. One doctor writes that he was deeply moved by Jane's story, but he has certain reservations. All must be pleased, he says, that the circumstances of her dying were mitigated by the hospice, but he adds, "I feel obliged to call into question the implication that to die in a hospice is necessarily better than to die in a hospital."
Other doctors agree that the hospice way of dying can make the end far more bearable than it might otherwise be, but they argue that home care provides the best answer. Hospice workers, they say, should come into the home and minister to the patient there rather than take him away from his accustomed surroundings. The hospice might be right for England but not for America. The much higher level of prosperity here, so they maintain, makes it possible to accommodate the dying person more easily in the larger American home, and to provide whatever medical and psychological support is needed. The best place in which to die, they say, is the home -- and they are right.
But not everybody has a family home, says Dr. John Lynch, the Washington Hospice Society's medical expert, and some family homes cannot offer the physical and emotional support a dying person needs. The Society is now trying to set up a homecare system in Washington by the end of the year, but that would be only a first step to opening a residential hospice with about 40 beds in it.
The progression from home care to hospice is a natural one for American conditions, and is indeed a good way to proceed. In England, the National Health Service is willing to help hospices with funds, though these are limited; but here the money has to come mostly from private sources. It is easier to raise funds for the less costly home-care program, to demonstrate its useflness, to gather community support for it -- and only then to establish a hospice proper.
Those who think that the high level of prosperity here makes hospices unnecessary are laboring under the usual American misapprehension that money and technology can solve most problems. But in the English hospice that helped Jane to die peacefully -- "happily," as she said herself -- there was no advanced technology, no intravenous drips, no resuscitators. The most comfortable home, the most loving family, the best possible home care would not have been able to help the 71-year-old bedridden woman rescued recently from two months of pain by Robert, the doctor who had looked after Jane.
It took him two weeks of close and continuous study of the woman's condition to unravel the large and small discomforts twisting through her body. Now she can walk again, and is virtually free of pain. He could not have done that for her at home -- but now she could go home if she wanted to. Indeed, it is the purpose of hospice care to get the patient free of pain, to teach the family how to administer the medicines that will keep the pain at bay, how to cope with their own and the patient's emotional problems -- so that the patient can spend as much time as possible at home.
The process of dying can impose intolerable strains on people. The hospice can relieve those strains by giving the family a week's "holiday" from the patient every month or so -- and the patient can then come back to a home from which the stresses that tend to build up in such circumstances have disappeared. Perhaps in the right suburbs of American cities, such stresses are less likely to arise -- through this is arguable -- but the crowded and tense conditions of the inner city will often deprive the dying person of the physical comfort and the peace of mind that can do so much to make the process more bearable. Here, too, the hospice could be a great help.
Then there are those among us who cannot stand to watch the suffering of others. There are members of families who will feel inadequate because they cannot relieve the suffering of a person they love. Others will feel a sense of guilt, however misplaced, at having failed to do everything possible to preserve the life of someone they love, and their uneasiness will communicate itself to the patient and introduce a strain into the relationship that can become intolerable. No family, whatever its circumstances, is proof against such problems -- which cannot be easily resolved at home. But the time the patient spends in a hospice can be used by the highly expert team, which will have handled such problems before, to smooth out the difficulties and to make it possible for the family to find itself again.
Then there is the single person, a problem familiar to health-care workers in many cities, but particularly acute in Washington. Many of the women who came to work here during World War II have remained single. Where can they turn when the time comes? To die alone "at home," or in the impersonal atmosphere of a hospital, is often no better than to die in a nursing home, which is designed to provide prolonged care rather than to help people live the last weeks of their lives more fully. In a nursing home, as in a hospital, the death of a patient is seen as a failure, and the body is disposed off almost by stealth. In a hospice, death is in the natural order of things, and the patient is helped to glide gently and lovingly toward an end that we all know will come to us -- if only we could learn to face it.
That is what the hospice now being planned by the Washington Hospice Society, and by a number of other communities around the country, will do for patients and for their families. A few communities have advanced much further, but Washington is a good example precisely because it is very much at the beginning of its effort, as are so many others.
Fundraising is something of a problem, because the IRS is proving sluggish in granting tax-exempt status to the society, which was formed in 1976. The IRS official to whom the application went for processing had never heard of hospices. In the end tax-exempt status will certainly be granted, and although the society assures potential benefactors that they will be able to claim exemption retroactively, this constitutes something of a stumbling block. So far the society has collected only $45,000 out of the $400,000 it needs to get started. Is the generosity of Washingtonians really so limited? Could not one of the imposing private homes in this city be bequeathed to a hospice that needs room for 40 beds?
Hospice Action, which was formed in Washington recently to distribute information nationally about hospices (the address is P.O. BOx 32331, Washington, D.C. 20007), has no connection with the Washington Hospice Society, but is similarly inhibited from fundraising pending grant of tax-exempt status. Seven thousand letters requesting information have been received by Hospice Action as a result of the interest evoked by the article about Jane, but they were not all accompanied by stamped, self-addressed envelopes. The first replies from Hospice Action began going out only last week. All the work is being done by volunteers, but the expenses of printing and the like are mounting. Hospice Action is mounting a drive to raise enough funds to establish a Washington office with a full-time executive director.
But Jane has already accomplished something of what she wanted to do when she asked us to write about the way the hospice helped her to die. The Post article was reprinted in England by The Manchester Guardian, and the National Society for Cancer Relief in London has written to us to say that the 13 beds that stood empty in the hospice for lack of funds while Jane was there will not remain empty for long. The Society says that the "nationwide interest" evoked by Jane's story and the contributions that have come in from British readers will make it possible to begin bringing all the 25 beds at the hospice into full use starting next month.
In America, too, Jane's story has accomplished something. It was read by the family of a Maryland woman who was dying of cancer in a hospital. As a result, they write, her doctor was moved "to bend the hospital rules," and the woman's husband was given a bed next to hers. Like Jane, they write, "she was never left alone." And it made a difference. It will take time to build hospices, to establish homecare teams, to train the skilled professionals that are needed. But the concept of hospice is beginning to gain ground, because it fulfills a need that cannot be satisfied in any other way.