on a daily basis but it was something that was part of your life. You never knew when it was coming-even less so than you do today. She feels that we have isolated death. We are not going to talk about it. We're not even looking at it. I have noticed lately that there are more One of the real problems getting serious about God instances where the coffin is closed. It seems to be one more way of saying, "Well, this hasn't even happened." You have no way to relate to it really. So you wouldn't be in favor of hospitalizing or institutionalizing people. You would, I assume, prefer that a dying person be in his home or at least in a setting such as a hospice where it's less technical, less medical. in connection with a hospital. Do you think that's preferable, or do you think they're better if they're segregated? DR. BAUMAN: Well I think its better if they can be segregated. But what we are running into, of course, is the enormous cost of health care in this country. And to build or outfit a hostel is enormously expensive. We need to find more financial resources-either government funds or other kinds of funds to create more hospices. There is no question that we need them. And there is a great desire for them now that we're discovering what they can do but it is hard to find the funds and the facilities. We have had several people who have gone to England to die in the hospices there because there are no adequate facilities in this country. AGING: I imagine that you deal primarily with people who are religiously oriented. But I imagine you also deal with some who are not religiously oriented. Do you find there's any difference between their acceptance of death or do you think its based more on personalities? DR. BAUMAN: Well in my own ministry I was, I guess, concerned about this because we've noticed that there is little difference between church members facing death and non-church members, and I have since read some research articles that have been done on this and the conclusions are the same. It doesn't really make any difference at all in the way you face death, either for yourself or your loved ones. Church member or non-church member, what makes the difference is the degree of aliveness in the faith that you do have. DR. BAUMAN: Again the general question is hard to answer because some homes are simply not prepared to handle the terminally ill patient. It may be extremely hard on the family and patient in a place where you just can't handle that. And secondly the hospices are so few and far between now, so I couldn't say I'm not in favor of going to a hospital. Sometimes it is the only really reasonable alternative. But where conditions allow it, home is the best place. I have no doubt about that. And many hostel programs such as the Haven of Northern Virginia work very hard to create the condi- There are some non-church tions under which the person can die at members who have a lively faith. God home. When it can't be done at home, is very real to them and their hope is then I'm very much in favor of the very real and authentic and there are a hospice movement where facilities are lot of church members who talk about available-special facilities which, as God all the time and go to church quite you say, are not as technical. The nec- often, who's faith is very cold, superfiessary things are there but not the cial, and unreal. So, the answer is that heroic measures. Instead there are it isn't being a church member or not caring people. Nurses and doctors can which people often associate with spend more time with the patients and being religious. (Well, that's why I said listen to them. religiously oriented.) But if their AGING: You mentioned hospices religion is a vital part of their lives it does make a difference. There's no doubt about that. The way in which they can handle the emotions that are involved, the way in which they relate to the people around them, and, certainly, any hope that they might have about their situation is governed by their degree of faith. Ultimately, for all of us, when you've got your pain under control and you've got your will taken care of, and some of these other things, then it comes down to where am I going or what's happening to me. To be able to have hope, the belief that when the physical body dies God provides us with a spiritual body for the next life, makes a tremendous difference. If you believe that. AGING: I was wondering about those people who totally reject the concept of a divine being, the idea of anything beyond this material life. I was wondering if it were difficult for them and you say that it is. DR. BAUMAN: Well, I think for the majority of them it is. Some of them are able to evoke a stoic courage, but in the face of the fact that life is ultimately absurd, it is quite a thing to be courageous enough to keep on living and then die with courage. And so I respect people like this but I find that they are relatively rare. AGING: I have never been able to bring up the subject of dying with a person and I didn't feel it was really right for me to do so. In the first place even when someone supposedly is dying, there is a possibility that he isn't dying, and by planting the idea in his head that it is hopeless, he may just give up trying to live. DR. BAUMAN: Well, I think the vast majority of people are eager to broach the subject. It is better to be the kind of listener that picks up that cue and lets the person bring it up. In my opinion it's not good to bring it up abruptly. But if we listen carefully, in almost every case I have found the person will give all kinds of clues. If we simply respond to what he has said with another question and show that we are willing to be there to listen, and that we're not going to be really shocked at whatever he says, in the vast majority of cases he will broach it. So I think in general it's better to let the person bring it up. Of course, the will to live is very important. The will to live up to the very end is important. But often times when you're with a person they will say something like, I can't understand why it's taking so long for this treatment to do me any good and if you respond to that by saying, "Well I can understand how you might feel discouraged," or "Do you feel discouraged about it at this point?," just a direct reflection of the feeling that seems to be in back of that, they will surprise you many times and will just fly right into it. They're just waiting for somebody who will listen and let them get some of these feelings out. So you don't have to bring it up. I believe we should will to live until the end. I mean that it's part of the affirmation of life that makes life good. But there's a vital balance between that will to live to the end and the fact that we will all die. And you have to be realistic about that. But I just think in conversations with terminally ill people that you must let these feelings come out and let the vital balance play against itself. You can be affirmative, hopeful, and positive. Even the best medical researchers don't always know for sure. Yet at the same time you can be realistic about the fact that the treatments don't seem to be working, etc., and express that feeling. And often times patients will go through the denial and the anger and so on that Dr. Kubler-Ross mentions. AGING: I couldn't help overhearing when you were speaking to the gentleman who was walking out the door-you were talking about the laying on of hands, that is faith healing. Is that correct? DR. BAUMAN: Well I shudder when you use that word. I don't like that phrase. AGING: All right, because it has a lot of bad connotations. I realize that, but what I mean is that if one has a great deal of faith and one truly believes in the healing power of God, there is a possibility that things can be reversed. Have you, in your own experience, found instances of this? DR. BAUMAN: No question about it. For about 10 years now in this church we have had a very active ministry of spiritual healing. We do not call it faith healing because that phrase has been so abused by so many people. Spiritual healing simply recognizes that fact that God is the source of all life and of all healing. No doctor heals anybody. The doctor simply brings his skill, his energy, his gifts to remove the obstacles in the person's life through medication or surgery or whatever so that the healing power of God can work in that person's life. In a ministry of spiritual healing in the church we just acknowledge that from the beginning, and say that in addition to medication and surgery and other forms of therapy, there is the laying on of hands, the prayer, and meditation, and love of the community and so many other things that can be brought to bear on a person's life that will make it possible for God to give wholeness of body and mind and spirit to that person. In many cases the illnesses are definitely reversed, but we human beings are so complex that it is impossible to say whether it was the medication, the surgery, the prayer, or the laying on of hands. It's a combination of all these which we try to bring to the end of people's lives. We're very high on spiritual healing in this church and I am as a result of this ministry. I came to work with great reluctance, with great hesitation, because of the terrible abuses to which this whole thing has been subjected. The faith healer, to use that phrase which I don't like, puts all these pressures on the people who come to him. If they're healed, then the faith healer gets the credit and if they're not, it's because they didn't have enough faith and it's their fault. So the faith healer has got himself a no lose situation, which is very unfair. AGING: Well we know that a number of illnesses are psychosomatic, and as a consequence, if you truly believe in something, it could reverse the situation because there really wasn't a physical reason for the disease to begin with. DR. BAUMAN: But in the kind of unfortunate situation that we just finished describing, if you have powerful belief, what you can do is to arrest certain symptoms without actually being healed. This is part of the abuse of this thing. And those symptoms will either recur later in a more severe form or will break out in some other form of illness and that's why it is the deep healing of the person I am concerned about. Not in bringing some kind of hysterical expectation to a faith healer in which case you may have a temporary arrest of your symptom and not real healing. But what you're saying is absolutely true. If the illnesses are not psychosomatic in origin, then at least they're deeply affected by psychosomatic practice. No question about that. AGING: In closing, do you have anything which you would like to add? DR. BAUMAN: The only comment I was going to make was that thanks to Dr. Butler and others, we are now able to approach the whole field of aging much more creatively than before. I find that we are able to make the last years of a person's life, in many cases, the best years. Part of the way we're making them the best years is by honestly and openly dealing with the fact of death rather than denying and repressing it. This is contributing, it seems to me, to a creative aging period in the lives of many people. I know that I had a lot of people tell me that as they were dying, those last months have been the best months of their lives. And that is actually possible. The Needs of the Seriously Ill and Their Families: The Haven Concept Dorothy N. Garrett* n centuries past death was indeed considered as natural as birth. The dying person was in charge, often having made elaborate plans. He determined who would be present at his final moments and where this event would take place. His family adhered to his wishes, and those invited gathered around, sharing in his last moments. Gradually, as the centuries passed, these decisions were taken over by members of the family, and by the turn of this century, changes were again taking place. Family structures were changing, and we were becoming a mobile society with children moving away from their roots. In our efforts to become "modern," patients were placed more often in hospitals and nursing homes, partly because there were fewer extended family members to share in the burdens of caring for patients who were seriously ill. Once patients were placed under institutional medical care, decisions were removed from the family concerning the presence of family members. The need for a quiet atmosphere for recuperating patients required rules and regulations concerning visiting hours, including the exclusion of children as visitors. The result has been that the dying process has become in many instances mechanical and dehumanizing, separating families from patients at a time when they are needed most and when families have a deep need to share and care for their loved ones. Most people now die while receiving some form of institutional care, and yet studies have shown that the majority of people would prefer to die at home. At the same time, our health care systems provide monies primarily for institutional care, with little reimbursement for home care, therefore, not allowing people the option of being at home when seriously ill. At the National Council on the Aging's 28th Symposium in St. Louis in April of 1978, several speakers alluded to the fact that among those 65 and older, only 5 percent are in some form of institutional care, and yet 99 percent of the health care monies provided by Medicare went to pay for such services. Our older Americans are not being given the alternatives of health care which would allow them to remain at home, near friends and family and all that is familiar. Another problem was discussed by Dr. Arthur Flemming at the Symposium. Dr. Flemming, who is Chairman of the Civil Rights Commission, a former Secretary of HEW, and former Commissioner on Aging, pointed out that preventive medical programs had not been created for the elderly. He noted that the U.S. Public Health Service's preventive medical programs are almost exclusively for the young. During hearings by the Civil Rights Commission concerning civil rights for the elderly, members heard again and again that preventive medical programs for the elderly would bear little fruit. Dr. Flemming stated that such beliefs conflict with the concept of the worth of the individual. "The Civil Rights people are appalled by this insidious attitude in our society," he said. "All discrimination based on age is unreasonable," *Mrs. Garrett is Coordinator of HAVEN of and brings about conditions and attitudes which Northern Virginia, Inc. are, "devoid of respect and compassion to wom en and men who have contributed much to their families, their communities, and their nation..." Lack of preventive medical programs coupled with a lack of alternatives for older citizens concerning medical care perhaps are the end result of the lack of understanding society may have regarding the needs of the sick, the dying, and the elderly. Since many of us have grown up never experiencing the final hours of life of a relative or a friend, the result has been that we are called a death-denying society. Death is considered a "taboo area." Not only may the spectre of death raise many fears within us since we may have had no personal experience with someone dying, but we may not understand what is happening to the patient or the members of the family. The time of our own death is something we cannot control, and this raises the anxiety level in a society of people who desire self-control. It is an unknown. We may consider it a malicious intervention, a bad act, a frightening happening. An even greater fear surrounds the process of dying. According to Dr. Cicely Saunders, Medical Director of St. Christopher's Hospice in London, England, "There are many who would like to help people and their families, and who do not know how to begin. This includes relatives and friends as well as nurses and other concerned professionals. Many of us have heard the cry 'I feel so helpless', or the sad admission, 'I ran away--I was afraid'." Dr. Saunders goes on to say, "Dying is part of living but too many make a lonely journey toward it because others leave them in isolation." Each of us will make the journey of the final moments of dying alone, but no one should be alone when dying. In order for the family to have its rightful place in caring for their loved one, they may need support, to have someone say, "I care, I'll be there with you." They may need help in understanding the verbal and nonverbal language of the patient and their own feelings. Sandol Stoddard writes in the book The Hospice Movement that dying is hard work. "The woman who gives birth instantly and unexpectedly, in a taxicab perhaps, or in a public rest room; the man who, looking the other way, is smashed to bits by a truck; or, feeling a little overtired one morning, leans over to tie his shoes and is dead before he finishes these, fortunately or unfortunately, are the exceptions among us. In most cases, dying, like birthing, is a process requiring assistance. It is an event that asks us to be present for one another with heart and mind, bringing not only practical help as necessary, but also attentive awareness and appreciation of the individual involved. At its finest, it elicits from us the frankly and fully offered human companionship that brings positive benefits, and a kind of joy, to any shared venture."2 During the growth of our nation, we have lost much of the sense of caring for one another. Our urban communities are filled with nameless faces, who may find themselves alone when crisis strikes. The problem of creating an awareness of the needs of the seriously ill and their families, and, thereby, a caring among neighbors is all too real. My brothers stand aloof from me, A New Concept in Caring It may be well to explain "hospice" for readers not acquainted with the word. Hospice is a concept of caring for terminal patients, usually those who have some form of cancer. Whether the patient is receiving care at home from the Hospice home care team or in an in-patient facility such as St. Christopher's Hospice, the concept of caring permits the family, including very young children, to participate fully during the patient's illness. Death is not considered a failure but a normal part of living. Hospices are being organized in the United States at a phenomenal rate, i.e., from about 60 a year ago to 195. The National Hospice Organization has opened offices in Washington, D. C., to develop the standards and criteria for hospices in the United States. In the fall of 1975 a volunteer program designed to assist patients who were seriously ill and to provide services for their families before and after the death of the patient began to take shape in Northern Virginia. As the news of the potential volunteer program spread, 70 people responded with interest, 12 of whom felt a commitment to help organize a program. For some the need for such a service was all too apparent. They had experienced the loss of children or parents to long terminal illnesses. They understood the pain of isolation, of loneliness, and the need for support during their ordeals. The three nurses who committed themselves to the hard work of organizing saw an opportunity to reach out in ways that often were not possible in their nursing careers-offering comfort, listening, holding the hands of patients. For others the possibility of creating a new concept of caring for the dying touched their hearts, and they felt inspired to share their talents and abilities in a meaningful volunteer effort. The 12 organizers began working together in early 1976, and nine months later, "gave birth" to the volunteer program which became known as HAVEN of Northern Virginia, Inc. During the organizing time, the volunteers learned that patients need help in adjusting to the loss of independence and self-control during serious illness and to retain as much selfdetermination as possible. The patients also may need help in seeking daily fulfillment and satisfaction, and in retaining an image of selfworth and dignity. Often it is difficult to adjust to bed confinement and complicated equipment. Families also may need assistance in keeping communication lines open and in keeping the patient from feeling isolated, to understand the patient's continuance as a contributing family member. Children need to share in caring for the patient and to feel involved. Families also may need assistance in dealing with grief and bereave ment. Volunteers could offer their services and talents to help the patient and family work together, helping them to feel they are not alone and that people care. Ignace Lepp wrote in his book Death and Its Mysteries, 3 "We can die in peace when we have done our duty." This is also true with the family. They are more apt to let go of their loved one when they have seen him die in peace, and they have been a part of his care. They have done their duty. Friends may have difficulty in knowing what to do or what to say to the patient and the family, particularly after the patient has died. They may be afraid to mention the name of the deceased, thinking they will create pain for the bereaved family members. Instead a barrier may be created for the family members, who may only want to talk about their loved one. In effect, they are not being given permission to do so by visitors who talk about everything except what is uppermost in everyone's minds-the loss of the deceased. Neighbors may feel they should not disturb or intrude on the privacy of the bereaved. No longer do they drop in for a cup of coffee or to borrow a needed item. The desire to be unobtrusive creates a stronger barrier of isolation. The flow of community life is no longer involving the bereaved family. During the time of the illness, friends or even relatives may shy away, not visiting. The fear of saying or doing the wrong thing may be strong. They may want to be helpful, to lessen the burdens of the family, to say words that are healing. There may be a lack of recognition that the most important gift to give is their own presence. The words are not so important. To care enough to be there, perhaps holding the hand, just listening, is supportive and shows caring. Too often we may say, "Please call me if there is anything I can do." This is not helpful to the family. What is helpful is to recognize that it may be difficult for the person providing care at home to get out to the grocery store and to offer to do the grocery shopping. It is helpful to take the young children for the afternoon in order for the exhausted mother or father to get a rest or to spend time with the patient without worrying about the other younger members of the family. The Four Pains During a seminar on the hospice concept of caring for the terminally ill, Dr. Tom West, Assistant Medical Director of St. Christopher's Hospice in London, England, spoke of the four pains of terminally ill patients. These include physical pain, mental pain, social pain, and spiritual pain. All must be attended to in our efforts to help the patient to be comfortable and to participate in the world of the living. Physical pain is dealt with creatively at a Hospice by the use of many methods of pain management. The hospice philosophy includes the belief that the memory of pain must be erased, and, therefore, pain management continues around the clock to prevent its recurrence. A person in pain focuses on it, and, when medication is given, may keep watching the clock, worrying about when the pain will start again. Concentration on pain actually intensifies it. Once the patient is kept pain free, on dosages which allow him to be alert, he can be a part of the world of the living, forgetting about this aspect of his illness, and involved with those around him. Mental pain includes the many stages Dr. Elizabeth Kubler-Ross has mentioned in her book On Death and Dying.4 During a recent television program, a clergyman described dying as taking a journey. He used the word "exodus," |