Of the thousands of letters we have received in reply to our account in Outlook two weeks ago of our daughter Jane's death in an British hospice, few failed to mention the tears - and comfort - that the article evoked.
There is the unemployed girl in her mid-20s who is nursing her mother through the last stages of cancer - alone, as so many others in her position, sleeping fitfully because the patient needs to be turned over every few hours. She is hoping that she can hold out for as long as necessary. But the article "made me cry and laugh . . . This isn't a said note, it's a happy note," she said, because she, like many others who have written to us, now knows that the end can be made bearable - if not now, then for others, in the future.
At the other end of the scale there is the head of a huge corporaion who read the piece during a flight to California and wept - and added that, as a company, "we will remember that this is an issue to which we must pay some attention."
The number of letters is now climbing to 5,000, and with the article now distributed to the more than 200 newspapers carrying the Washington Post L. A. Times News Service, the response is likely to increase.
Our main problem now is how to deal with it. Everybody wants to know how a hospice can be established in his or her community, how to get organized, how to provide the facilities described in our original article. But the simple fact is that there is no single answer to all these questions. The answer must differ from case to case, and we are trying to analyze the correspondence to provide the different kinds of answers required by doctors, clergymen, nurses, public health administrators, those now ill with cancer, their families and many other categories of letter writers.
Nor can these be form answers, for many of these people have written their hearts out to us - and they are sitting there, at home, watching the mail every day for a reply they believe will give them some hope. Yet, individual as the story and the grief of each person is, most of the questions divide into a dozen or so categories. What we hope to do is establish a team of volunteers who will read the letters, write a paragraph or so by way of an individual response to any personal questions raised, and answer the remaining questions in printed form. This is the only way we can respond to their concerns as speedily as they want us to.
Still, this is only the first phase of what Hospice Action, the organization now being formed, intends to do. We hope to awaken and organize the public so that it will become concerned with the provision of hospice care to all those who need it, the poor as well as the rich, in all parts of the country, at all times. That way the process of dying not only from cancer but also from other long illnesses will be made more bearable than it usually is.
The provision of hospice care is only one means to this end. What hospice does, in the words of the founder of the first British hospice, Dr. Cicely Saunders, is to say to the patient: "You matter because you are you. You matter to the last moment of your life, and we will do all we can not only to help you die peacefully, but also to live until you die." That it can be done is proved not only by Jane's story, but by the stories of hundreds of others, in Britain as well as in this country, who have had the benefit of hospice care.
For it would be wrong to convey the impression, which our first article may inadvertently have done, that hospice care is not available in this country. There are about 100 hospice groups in existence, though many are only in the most elementary stages of development. There are hundreds of doctors, nurses and volunteer workers who haved labored for years in the most difficult circumstances, often in the face of considerable bureaucratic and social obstacles, defying the suspicious of some of the most eminent members of the medical profession. "If they're sick," said one medical luminary to a hospice doctor the other day, "they ought to come to the hospital."
What our letters show is not just the patients' fear of the impersonal and antiseptic hospital atmosphere at the very time when he needs all the love and care that individual attention can give. They also show the despair and resentment at the attitude of many members of the medical profession, summed up in a letter from a man whose father died recently: "The most terrible part is the doctors' stupid insistence that they are in the business of saving and prolonging life, no matter what the consequences to the patient and the family - and I was a party to it!"
Such hospice programs as are available in the United States consist mostly of in-home care provided by visiting doctors and nurses and volunteers, but this is far from adequate in all cases. A handful of hospice units that provide beds and 'round-the-clock care are in operation, and more are being built.
But standards vary greatly, and sometimes those who start with the best intentions may end up creating the most serious problems. A National Hospice Organization, centered in the New Haven, Conn., hospice, is beginning to grapple with the organizational and medical issues that require attention; it will be the aim of Hospice Action, which has been formed as a result of our article in The Post, to give it what support we can.
Because of the huge national response to the article, we will be able to put in touch with each other, for instance, the people in a particular community who have written to us and encourage and help them to organize for local action. Because it is of the essence that the effort be a local community enterprise, the fund-raising should also be a local operation, though it might prove possible for Hospice Action to provide local groups with advice and guidelines.
There are a great many questions raised by the hospice concept itself, and we hope to examine them in further articles, and to look at some of the hospice groups now being set up, in particular in the Washington area.
But what Hospice Action must do above all is to accustom people to think and to read about dying, to remove the taboo on the subject of death as an earlier generation has removed the taboo on sex, to make the subject an integral part of our culture rather than a morbid topic to be avoided at all costs - until it is too late.
(For information, send a self-addressed stamped envelope to Hospice Action,P.O. Box 32331, Washington, D.C. 20007.)